Stop Taking Your Health For Granted

Title is a little harsh, huh?

Let me start with the good – my ulcerative colitis SEEMS to be quieting down. I say seems because I could be jinxing it. The last two times I received Remicade they bumped me back up to the maximum allowed dosage and the plan is to stay there permanently (and fun fact my insurance has me currently owing $48K for those additional doses LOL). I think it is doing the trick but TBD when I do my next scope on the reality. 

The bad is that my rheumatologist was convinced that the arthritis was an offshoot of my UC flare but my joint flare ups are on the daily still even with the UC symptoms lessening. They started me on an additional medication but effectiveness can’t be determined for 1-3 months. YAY. Until then this is what you can expect my hands to be looking like most days. It hurts. A lot. 

#notnormal

Maybe harder to notice the puffy right knuckles

I worry that I am in my 30’s and keep seeing that the longer you have arthritis inflammation the more damage will be done to your joints. For vanity purposes, I have nice hands, I don’t want warped fingers any time soon. 

Now to the title. I go back and forth with being frustrated by being “sick”. I didn’t run my 50K on 10/1 because I was exhausted from work travel and my body just felt like crap. It was the right decision. But that doesn’t stop me from wanting to be able to do these things. I get so annoyed seeing people treat their bodies with no respect, be excessively overweight, smoke, eat like crap and yet they don’t suffer the same repercussions. 

I am still active in spite of my “disease". I’m still running 40ish miles a week. I’m going to bootcamp. Now joined OrangeTheory (#obsessed <— and yes I just hash tagged). But I don’t FEEL great the majority of the time. I do it because that is my definition of normal and what I enjoy. I will not sit on the couch and feel sorry for myself, ever.

I gave up meat and dairy from July until this week hoping for some magic pill. I wanted going plant based to have some sort of effect on me physically. It did not. (also once I am in remission I will probably try again because while it didn’t help my flare – I was so far gone and my deficiencies so bad it may not have been the best trial period).

I am slightly type A (okay 100%) and I want to be able to fix myself. 

When I was obese I had a come to Jesus moment and was like hey being young and fat is awful and I want to live a full life, so let’s get this under control. Boom, started counting calories and working out consistently and lost weight.

The UC, the arthritis, they are out of my hands and it annoys me to no end. I cannot fix myself no matter what I do. I am thankful for modern medicine but often will question the why. Why can’t someone who throws their health around and doesn’t take care of their body deal with this? Why does it have to be someone like me that wants to compete in endurance sports and push my boundaries physically? Why can’t it be the person not wanting to take care of themselves physically that has a chronic disease (x2)? 

That may sound god awful mean but that is what goes through my head when my feet hurt when I take that first step in the morning or it hurts to hold onto a dumbbell. 

So PSA be grateful for your health, please. If you are treating your body like crap and are “fine” count your blessings and pray that it doesn’t one day catch up with you. I alternate between wanting to be healthy into a ripe old age and worrying about how a chronic illness will play into living into said ripe old age. Unless they find a cure I don’t have the luxury of never having to worry about my health. 

Health Stuff: Crohn's + IBS Diagnosis

Hello there and TGIF! 

I am going to start off with something that warms my heart every morning.

This beautiful golden retriever loves the train. She gets super excited, all over wiggles, when it comes into the station, and her owner brings her every morning to watch. And her rain coat today was just on point. #allthefeels for this duo.

I have been waiting a little while to write an update but finally have some good, and bad news. 

Towards the end of January as I was due for my Remicade infusion I started to feel not so great. I figured it was the Crohn’s and my body was ready for the infusion. Plus the stress from finding out my company is closing. I told my doc (new one at the practice my original one left and I decided to stay) and she mentioned my dose had been reduced from the max. 

When things weren’t getting better I assumed it was due to the dose being lowered. 

Insert blood tests, scopes and a ct scan later…and the good news is, the Remicade has knocked the life out of the disease! As in the doctor who did my CT asked if I was sure I had it. And considering how severe it was this time last year that is AMAZING news. 

Side note: I don’t think I will ever want lemonade again after having to drink like 100oz of this stuff:

The bad news is, as my GI suspected, I am now presenting with IBS (which isn’t all too uncommon with IBD patients). 

She put me on medication, Librax, which is supposed to help with the muscle spasms and I have to say I am feeling a little improvement. 

But, this also means learning trigger foods which shall be a giant (and not so fun) undertaking. 

I got VERY comfortable and felt so good for a while that I loosened up on my food “rules” (part of why I wasn’t really believing it was IBS vs a flare since this came out of the blue again) but now am reigning it all back in. 

I am doing research and linking up with the RD at my GI practice for some help, but I know it means backing off some veggies, very minimal lactose and sugar/processed foods. I won’t be going gluten free. Gluten has never been an issue for me and I have tested for celiac a couple times already. I don’t eat a ton anyway but I know that isn’t my problem.

I have a half marathon next weekend which I had high hopes for. At the moment I am not sure I will be able to race it if my gut is not cooperating so it may be more for fun but we shall see. 


At least I have a pretty new bright pair of Kinvara’s to run in. 

So there we have it.  I am bummed for something else to figure out but honestly I would rather this than to know my Crohn's is flaring. 

Crohn's Remission

I have waited a long time to write this post. 

A year to be exact. 

There were some dark times as I went through my flare but it started years before even being diagnosed. 

I had been cautiously optimistic after my last remicade appointment. My wonderful GI doc had doubled my usual dose to the highest maximum allowed to try and kick me into remission. Within a couple of days, my lingering symptoms were gone. 

At the same time I received two more iron infusions as my levels had plummeted once again. Then it turned to a waiting game. 

I kept waiting for the return of symptoms but after a month or so started to think about it less. 

I raced when feeling less than ideal (usually my own fault, because, wine) - and was setting PRs. 

Three to be exact in the 5K, 10K and 5 mile and started to gain confidence. 

I went to my hematologist for blood work last week and when we got the lab results we were equally floored.

I started at an iron level of 2, peaked at 14 before it slumped again and just came back at a 181 - off the charts. 

I spent this morning hooked up to my favorite IV and based on symptoms (aka basically NONE) for all intent and purposes I am in remission (we have to do a colonoscopy to check how the ulcers are still). 

Living that Remicade life.

This is as good as it gets folks. There is no cure but hopefully I remain flare free for a very long time. 

Even as I started feeling better in the latter part of this year I kept waiting for the other shoe to drop and the flare to return (case and point I refused to use my vacation due to wanting to have a bank in case I got real sick again. I now have a month accrued...and am taking two weeks of starting next weekend thank you very much). 

But now, my mentality has done a total 180. Most days I feel amazing, or you know, normal.  But to feel normal and healthy IS amazing. I still get some issues every now and again but I can push through more as an "inconvenience" versus before being knocked out and sidelined. 

I am thankful. I am so so so very thankful. For those who have supported me through the darkest time, as well as for modern medicine. There may not be a cure but the advances made thus far have gotten me to this point and allowed me to regain my life.

I am thankful for a team of doctors that would not let me accept that feeling 75% as okay. I am thankful that they never once tried to deter me from leading an active lifestyle. I am thankful for the blogging community that has connected me with others in the same position and helped me see that there was a light at the end of the tunnel. 

I've never felt so blessed. 

Garmin VivoFit Review

Hope everyone enjoyed their long weekend (or hopefully had a long weekend!).

Activity trackers seem to be the biggest rage these days and I avoided them for as long as I could.

But after reading so many studies and articles over the past couple years about how even though you might workout daily - and at an intense rate that you still may be too sedentary. As a marathoner this really had me thinking for a while. Yes, I workout 6-7 days a week but at the same time I work 10ish hours most days and that doesn't really bode well for a healthy lifestyle. How many of us have looked at the clock after a busy morning to only realize that it is lunch time and you haven't gotten up since you walked through the door? #corporateworkflow 

Then one day my sister posted a picture of her app she had on her phone - nothing fancy it just tracked steps - and it was free so I immediately downloaded it. 

Within a day I was definitely addicted. But my already poor iPhone 5 battery was being demolished having the app running in the background (as was the lack of being able to be freed from my phone if I wanted to track). 

So I took the plunge. I bought the Garmin VivoFit (the original not the second version, since I like to save money and I was okay with it). 

And, I am in love with it. I got it and it has not left my wrist in the past month. 

It is oh so simple. There is no charging, it syncs within seconds (via bluetooth) to your phone or computer and the interface online has a lot of potential - and it also tracks your sleep. The one downfall of the original version I will mention is no backlight. So if you are going to bed and want to press it to sleep mode you can't see. But as I have learned it is also intuitive and will realize when you aren't moving anymore and figure out when you are sleeping for the night even if you don't put it to sleep mode! So smart!

I was honestly most concerned with steps and being active every hour so I have not engaged a lot with all it can do online. 

But I have to say it has very much changed my activity level. I am cognizant of getting up and checking that darn red line that begins to grow after an hour of activity. I also find myself going on more and more walks. Even the weekends first thing I either walk for coffee or make a coffee and go for a walk (if not working out first thing).

You can see below: in the beginning my goal for steps was slightly under 8,500 per day.

Now, it has grown to over 15,000 day. 

And that was within a month.

It is intuitive in that it alters the step goal every day to adjust to your normal daily activity. 

This, is where I think it is a bit detrimental for me. My competitive attitude (with myself) sets in and I have to exceed that goal. 

By a lot. 

Obviously on one hand that is good for me, and has set some very healthy habits. On the other, it has played to my already slightly obsessive tendencies and I notice I get a bit of anxiety with "needing" to demolish the goal for the day. 

So yes, it has me walking EVERYWHERE (I haven't taken the subway in the past month I don't think or a cab) and I walk the stairs a few times a day up the 12 flights at work and then some, I get up when watching TV to move about; but on the other hand I have definitely developed an attachment to it. 

I didn't want to wear it the other night because I was going out and it just didn't "go" obviously but that gave me a little anxiety. Not a good thing. But I have a very all or nothing attitude. 

I think at the end of the day it is definitely something that people can benefit from as far as becoming more active. And even for those of us that don't have a problem being active (as in working out/training for an event etc) I think it shows you just how your activity trends during the day. You can work out and be in shape but still be too sedentary. 

Current State of Affairs

So this is a mish mosh of things in my life right now. I have had so many frustrations lately and have been trying to be zen about it but basically frustrated is the state of affairs over here.

If you know where I work then you can google it and see the headlines to know how THAT has been. Things are on the up and up but holy few weeks of turmoil.

On the Crohn’s front, things have been okay. The couple weeks before my last remicade appointment things were getting not so great again. My doctor wasn’t too concerned because the first 3 are part of the induction phase and you aren’t expected to be in remission – a lot of people (like me) just see a marked improvement. So obviously when I started getting really symptomatic again I was stressed out. It has been a week and a half since that 3rd infusion and well I was kind of an ass to my body last week (pizza, ice cream and too many beers + a wine class) so don’t know if what I am feeling is because of THAT or if we need to add back on the prednisone for a few days (although it didn't help in general last time). Time will tell. I am trying to take it in stride but god I just want to feel WELL.

Plus my newest blood panels came back and still severely anemic (as in no traces of iron – high five body) which still explains the energy lagging and my hair falling out at a rapid and concerning rate. We are addressing it but it is still annoying. It makes me feel lazy when I have a hard time and have to force myself out of bed – I know there is a medical reason to justify how I feel but I can’t help but just feel lazy.

My running still is sucking. I can’t run fast. And it is PISSING ME OFF. I am being patient. I am running 20 – 25 miles a week now but they are SLOW. And I am still too scared to really run outside.  I know that should be the least of my concerns but it just makes me sad. I know there are many logical contributing factors but god damn it I just want to be able to sustain sub 10 pace. Running makes me happy usually and THIS just makes me unhappy.

I 100% fall into the comparison trap. I see others come back from injury or a break or pregnancy or even a flare like me and they kick ass. Me? I’ve literally NEVER been this slow. Even when I was trying to lose weight way back when (and was about 30 pounds HEAVIER) I wasn’t this slow. And it makes me sad to think I may not ever run at the potential I was before. Good bye to getting back to 1:5x half’s on the regular.

Speaking of weight loss I thought that would be the magical jump start to getting speed back. I pretty easily lost 12 - 15 pounds (thus far) and am back at my old race weight.

I’m not faster.

But I do look better in my clothes? So, yay?

I know my “problems” could be a lot more but I just really want to wake up and feel GOOD. Consistently. Not just have some good days. I don’t think I will ever again take my health for granted.

And if you have stuck with the complaining this long, thanks for listening! 

Me vs. Crohn’s: I think I am Finally Winning

Monday was my second Remicade infusion. In the past 2 ½ weeks it is mind boggling just how much BETTER life has gotten.

Let me back up a little with a little time line though, and brace yourself this is lengthy:

Symptoms began as far as I can recollect back in 2012. That also coincides with when I got more “serious” with distance running. I was racing a lot (at one point I think I ran about 6 half marathons over 8 weeks). And when I went to the doctor concerned I was told it was running induced and dismissed. I figured fair enough I have a “sensitive” stomach and running was intensifying things - everyone talks about that it seemed logical. 

I tweaked food choices. I got pretty thin the summer of 2012 because I was basically scared of food. 

Continued to struggle though marathon training cycles. I would have a few months of nothing more than “urges” on runs then followed by a few months of really really shitty can’t even attempt to run outside type training. I think I trained the majority of my cycle leading up to my goal marathon fall 2013 on the treadmill (which would probably prove my demise and DNF in that marathon).

I tapered back the running going into 2014 totally burned out before signing up for Chicago and NYCM again. I had a pretty stellar summer of running. I would have to stop MOST long runs but it wasn’t awful. I specifically remember having a date night at Dos Caminos the day before a 20 miler getting drunk eating cheesy, bean goodness and being totally fine the next day for the long run. It was as if I was daring my “sensitive stomach” to react and it didn’t. I thought yay I don’t have to be so careful.

Then the week before Chicago shit got real. As I was tapering I started to feel like crap. I tried to stay positive but all of a sudden everything that had gone right for the past few months disappeared and I was miserable. And then Chicago happened and I was in every portapotty at every stop on the course. I cried. I was miserable. I threw my Garmin at my friend around mile 16. But still chalking it up to my stomach being sensitive.

I tried to ignore just how not normal it was (blood like a lot of blood all the time) and spending up to 20 trips a day in the bathroom.

Then NYCM happened and I think I literally only ate Kaiser rolls and grilled chicken for a week preceding hoping to be okay and I miraculously wasn’t quite as miserable.

But then a downward spiral continued. I finally went to my doctor and she immediately was like – You know absolutely nothing about this is even borderline normal and you need a specialist immediately. She also made me go gluten and dairy free.

Things got even worse. I finally make it to the GI and he seems awesome! He listens and schedules a colonoscopy for 2 days later.

Colonoscopy happens. He immediately puts me on Canasa as he awaits biopsy results but says it looks like Crohn’s. I wait. It’s the holidays.

He tells me the results are inconclusive yet puts me on Asacol. I cry. I am frustrated. He is putting me on medications but saying he doesn’t know. I am perplexed. I reach out to social media to use it for its powers of good and get a doctor recommendation.

I go to my new doctor who takes one look at my colonoscopy results and tells me, yes he is 90% sure this is Crohn’s. At the time I am feeling a bit better on the Asacol and we continue on that path. (side note he is awesome – he spent 2 hours with me that first day).

About a week later everything falls apart and I start getting sicker than I have been yet. He schedules me for a flex sigmoidoscopy. I get to be awake during this, yay! Immediately he diagnoses me as severe and puts me on Prednisone and Rowasa. I get a little sad but happy we are stepping up our game.

A week later, I am not improving and seriously getting worse. He goes through some options but decide that Remicade is the best course of action given the severity and non-responsiveness of steroids. We begin the approval process with my insurance and a week later it is being shipped to my doctor.

That Monday for the first infusion I said some prayers that this would be the answer. I honestly wasn’t even that concerned or sad that it had gotten to this I was just hoping this would help. The infusion went fine. No reactions and I left in a Benadryl daze (take Benadryl for the infusion) and went home.

That night and the day after I felt like a bus had hit me and was a little sad to feel so crappy BUT within 48 hours I was getting better symptom wise. I wasn’t running to the bathroom throughout the night, bleeding was slowing down, and I could make it through a meeting at work not desperate to leave for the bathroom.

About 10 days after that initial infusion as I got on the train I realized I didn’t seek out the train car with the bathroom. I WASN’T WORRIED. After 6 months of plotting my life out around bathrooms and avoiding things because I wasn’t sure of having access, I finally felt I was going to regain my life.

I had my 2^nd infusion on Monday and this time I felt fine after and the following day. In fact I had more energy! I even ran Tuesday and this morning BEFORE work. I haven’t worked out before work in months.

I have so much hope now. I got to a very dark place for a while. My non-existent iron levels had me doing nothing but work, gym and sleep. I was stubborn in that I more or less kept up a gym routine but good lord I was fucking tired as shit for months. Every class I took yoga, spin, running, boot camp I gave a disclaimer to the instructor that if I ran out there was a reason.

For some reason my symptoms would get the worst the second I went to bed. I would be up the majority of the night running back and forth bed to bathroom. I occasionally brought my pillow to the hallway and laid down outside the bathroom because it would get exhausting. Then trying to actually get to work and being afraid to leave my house for the train…it was awful. Running to the bathroom constantly at work was taxing. Especially when the bathrooms closest to you are off the kitchenette. Hi that is fun.

But now, it is amazing how a couple of good weeks can erase months (and quite frankly years) of feeling awful. I am hopeful that the positive reaction I am having to the Remicade continues and won’t stop. I know many have had success for years and am hoping for that same success rate.

But basically, it feels good to have my life back. I finally feel like I can reclaim normalcy as we get to remission.

And if you are still with me, thank you! I have had so many messages that have picked up my spirit and lifted me even when I was at my lowest. It helped oh so much when you feel so alone. It has truly been appreciated!

Health Update: Still Searching for Answers

It’s been a while since I began yet again on the journey to figure out what the hell is wrong with me so figured I would update! Skip this post if you don’t have any desire to read about my troubles :)

So here we are 5 weeks since I started with my new GI doctor and basically – there is nothing conclusive.

I had the colonoscopy which showed inflammation, ulcers, and a polyp but finally received the biopsy result and he is unwilling to say it is IBD (Crohn’s or UC). On the other hand, the symptoms are too severe to be in line with IBS.

My state of mind right now is frustrated. On Friday when we spoke on the results I had a minor breakdown. After the colonoscopy and seeing just how bad the inflammation was he put me one anti-inflammatory. That worked wonders for a week and a half and then miraculously stopped and all my symptoms returned with a vengeance. I am still taking that but he is ordering another high dose medication to take in conjunction to see if that helps. Both medications are IBD specific since my symptoms are pretty much in line with that. But as he put it, I may be in the infancy of developing it. (Side note: if this is the infancy of IBD I do not want to know what full blown is like because I am miserable already)

I know people are thinking they are helpful – throwing out I should do this “diet” or that, that I am too stressed (but seriously do you know me? I am like the least stressed person ever). The things is, I have been documenting what I eat daily since 2011 (with some missed here and there but it’s a habit now) and my body will respond fine one day to something and then next flare up. Case and point I literally ate the same meals for week’s straight recently and I went from awful to a lot better to awful on the same diet.

I know it is my right to be emotional. It is my health that I am talking about, but sometimes I feel like it could be so much worse and I am overreacting. It is not as if this will kill me. It just makes my life miserable. But I have also learned how to cope. And know where ALL THE BATHROOMS are, life is sexy right now let me tell you. Want to know how fun it is to have to have a side bar with your bosses about why you might HAVE to run out of meetings? Yeah, that is life right now.

I think that was what got to me. I have been coping. Living life around the symptoms. Just got used to "this is how life will be". Then I decided to use the medical route again to find some answers. I scared myself with how not normal it was and thought I would have an answer. The why. And yet as of now, there is no "why". Just a plan to keep things under control. I despise taking medicine. So that is part of what has me upset now; being prescribed various medications, praying they will help but not knowing the absolute cause of all this.

On the upside – I have been back to running and while I feel like hell during the runs I have been making it through them all! It’s like my body knows how much I need it. But I am sticking to the treadmill for now, just in case, definitely too scared to take it outside.

Total downer of a post but kind of bummed out in general. Between not sleeping through a night for weeks and the anemia plus other deficiencies I am tired. I am hopeful this next medication will work and work permanently but it is wait and see for now. After being really upset Friday I am back at a little peace with it all at the moment. Obviously wish there was an answer but for now I will just take some symptom improvement. 

I'm also not sure if I should get a second opinion or not? So new to the whole doctor thing - so if anyone has a stellar GI doctor in the city they would recommend to review my results and history I am open to it to see if I get a different opinion! 

And with that, the end. Happy post to come next! 

GI Health Updates

If there was ever a week I was ready to have end it is this week!

Started out with a move Monday that was more painful than it needed to be (and reminded me why I hadn’t moved in several years) but that is for another day – I will share some of the new apartment as it is coming together!

Tuesday I had an appointment with GI doctor number 3.

And I am thinking third time is a charm. I didn’t like the first two AT ALL. I walked away thinking they had no interest in helping me find out what was going on and were prescription happy vs. diagnosis.

My new doctor listened to it all. Spent a solid half hour with me. Everything I have been going through for the past few years. And HE was concerned about my quality of life and how I have just been dealing with it and have learned how to work around it. And anxious to help figure out what is going on. I told him my primary doc was thinking IBD and of course he said for my sake he hoped that it wasn’t since that lives with you forever.

My opinion – honestly I just want to KNOW. If it is then we deal with it. If it isn’t I hope we just get to the bottom of it.

So what does this mean?

Well of course he sucked my blood out while I was there. He told me to stop the whole gluten free thing if it was making me feel worse (and is testing for celiac although he doesn’t think that is anything to do with it – I was abstaining from gluten for only a short period of time prior so hoping that the test doesn’t lose validity).

And what I was waiting for – the joys of a colonoscopy.

Tomorrow.

So I am now in the fasting portion of it all. And definitely cannot wait to start the prep (sarcasm in case you are wondering).

I actually really don’t care or mind. Considering how awful things have been I actually kind of can’t wait. I am feeling like I am one step closer to a diagnosis.

So here’s hoping that my Christmas gift is figuring out what the hell is going on with me! 

One Week Down: Gluten & Dairy Free

For starters: seriously anyone that willingly goes gluten & dairy free without medical necessity is bonkers.

Because, pizza. Sandwiches. Bacon egg and cheeses. Cupcakes. Ramen. BEER.

The list goes on.

Now I know that there are gluten free and dairy substitutions but especially with my carb fav’s I am not trying to eat crap that is made gluten free – because a lot of it is just that, crap. And devoid of nutrition.

The dairy thing I am better with because I had been trying for a long time to limit it.

So let’s see, I am now a week in and I think the main thing is that I am eating better. If for nothing else this has aided me in stopping my boredom binge eating because well, the things that I would mindlessly eat aren’t permitted anymore.

I’ve dropped a couple pounds which is a plus because I have some extra that I am in need of shedding (or errrr like 10 pounds that really need to go).

As far as feeling any improvement with my GI issues. Not going to lie, it is worse. Probably times 5. Most likely because I am in veggie overdrive and the extra fiber is wreaking havoc but it’s been pretty painful and not fun.

It has also really only been a week this is a process that will take time.

I really am more just being a brat about some stuff. It is the convenience that is more of a hassle. I learned the hard way traveling needs to be done with your own food there won’t be too much at the airports. Also I’m in the process of moving and it is harder to find quick grab and go options. But it is what it is. Need to plan and be prepared.

On the plus obviously lots more fruits and veggies. I discovered quinoa pasta and am a fan – totally filled my wanting #allthecarbs fix post workout Saturday. And even though my stomach FEELS like hell – I am way less bloated.

I foresee this helping me clean up my diet and be more cognizant of what I am eating. I have a problem with binge eating and take away those things that trigger it and the problem starts to disappear as does the urge.

I would like to hear from others for any good bloggers/websites for gluten/dairy free. Favorite recipes, restaurants etc. open to it all! 

Just 2 months and 3 weeks to see if any of this helps clear things up. 

Le sigh.