Have you ever had one of those days, where life comes to an abrupt stop, even if just for a second, a minute, an hour? The little dose of reality rearing its ugly head? As my GI kindly pointed out today, I am a ticking time bomb. Luckily, I have managed to maintain, but as was evident today, I'm carefully toeing a very dangerous line with my health. Part of the difficulty, is that, for the most part, I feel and look "fine". Granted some days my 86 year old grandmother has more energy than I do, but for the most part, I am doing pretty well.

My lab work, and scans, show quite the opposite. Inflammation markers at an all time high, and severe bone loss from a combo of long term steroid use, and inflammatory bowel disease, were today's sticking points. Next plan of attack is to measure my trough levels/antibodies against Humira since I am no longer responding, give the azathioprine another month to kick in, get my routine LFTs, and meet with my GI and hepatologist in another month. Also adding in high doses of daily calcium and vitamin D to try to combat some of the bone loss. I am, unfortunately, highly steroid dependent. If I had simple, and I use this term lightly, Crohn's disease, without any complications, I would be a candidate for a resection. Unfortunately with having severe liver disease, my body cannot handle surgery at this time. My GI is pushing my hepatologist to act a bit more dramatically, and now that I've had six months of trials and tribulations trying to control the AIH, I think it's time as well.

I feel like it's only these intermittent doctors appointments that bring me back to the reality of having chronic disease. I do not try to hide or forget about my diseases, I just simply refuse to let them define who I am. Besides taking pills daily, I sometimes forget what is truly going on. I have gotten used to my body misbehaving, GI issues, bone aches, it's all apart of my normal day to day life. These appointments serve as a friendly, if not stark, reminder, that I am human, and that my health is not to be taken for granted.

Just finished up my third full week on Bactrim DS, along with the quartet of immunosuppressing meds. I've learned that my regimen is close to that of transplant recipients. Spent the better part of this past week with a viral respiratory illness, with swollen glands, wicked sore throat, coughing and being just gross. I hope that this isn't foreshadowing the winter to come. I just feel so run down. I also have been experiencing the lovely nausea associated with azathioprine all over again, and also the hair loss has restarted.

I know I've said this numerous times before, but I feel like I'm stuck in limbo. Can't really move forward until things get under control, and doing anything humanly possible to keep from rolling back. There have been some really positive things in my life though recently, which has helped keep me above water. Some semi-famous person with Crohn's (totally blanking on whom exactly) used an analogy to describe the disease... Something along the lines of comparing the disease to a duck floating on a pond. Above the surface, everything looks fantastic, peaceful, calm, serene, but underneath the water, the duck is paddling like hell to stay afloat, to survive.

So my appointments on Tuesday were disappointing at best. My LFTs continue to rise, and my Crohn's is the most active it's ever been. I'm working so hard to do my best to stay afloat. Keeping Paleo, working out four to five days a week, things going smoothly at work... It's just frustrating.

I am going back on azathioprine. I will be on four immunosuppressing medications, azathioprine, Humira, Myfortic, and prednisone. I will also be starting antibiotic prophalaxis, in the form of Bactrim DS, for I am an opportunistic infection waiting to happen. I have also returned to 20mg prednisone until further notice.

On the bright side, I may be one of the few people who have lost weight after six months of prednisone therapy. Trying to find the positives here. I follow up with my GI in one month, and hepatologist in two. Come on complete immune suppression (never thought I would say that in a million years). I'm not going down without a fight.

Tomorrow morning, I will be getting my monthly blood work. I'm nervous. How is a girl, whose had hundreds of vials of blood drawn within the past year, nervous about blood work? It's all about the numbers. If my LFTs aren't normalized, or at least signifcatly decreased, it will mean that I have "failed" another medication. The only problem is that I'm running out of options.

I know it's not healthy to worry or to fear something so small. I know that my life can't and shouldn't revolve around a single blood test. I just want to be prepared. This time, we spaced my appointments two months apart, with two sets of blood work. Last months blood work has been the worst since initially starting immunosuppressive therapy for AIH. There are only two medications left (and they belong to the same class of drugs), that I can try. There is also no way possible, that at this time I can discontinue the prednsione, not with my LFTs climbing. Initially, I was only supposed to stay on prednisone for six months. At this point, even if my LFTs go down, I will end up staying on prednisone for some time. This means I will be needing a DEXA scan, to get a baseline for how my bones are doing, with long time steroid use.

I need to quiet my brain. Tomorrow will come and go, and I will survive a mere needleprick. just got to try my best to stay optimistic.

Twenty Weeks

It's been twenty weeks, since I was diagnosed with Autoimmune Hepatitis. I have graduated to monthly blood work, and going two months between doctors' appointments. Initially, I responded fantastically to Prednsione and azathiorpine. I began to taper off prednisone, and have yet to normalize my LFTs. I was switched to Myfortic (similar to CellCept), a month and a half ago, while maintaining 10mg of Prednsione. Bloodwork from the beginning of September was unfortunately more abnormal than it has been, with my LFTs continuing to rise. I get repeat blood work the first week of October, and follow up with my specialists the second week. 

More than anything, I'm frustrated. I work my ass off, am compliant with my meds, eating healthy, taking care of my body, and it doesn't seem to be helping. I am maintaining my career, working out, trying to lead a normal life. I could be sitting at home, living off the "system". Instead, I wake up each morning, no matter how tired I am, and go to work. I know life isn't a game, that there are things out of my control. I also don't want people to feel bad or pity me. I try so hard to believe that God only gives us what we can handle. It's just that we all have a breaking point, and I've been skirting around mine a bit too frequently for my liking. 

There is one more medication option that I have left, before the dreaded transplant comes into play. It's disappointing that I am not responding well to another medication, and that I'm close to exhausting my options, but I will try my best to stay positive. 

Life.

Work has been extremely busy the last few weeks, so much so, I've noticed it's taken a big toll on my health. Currently on day 3 of a lovely sinus infection/bronchitis. I figured it was only time before I got sick, being on three immunosuppressants. This is my first infection since starting the lovely combo in May, so I guess I've done pretty well for myself up until now.

Sometimes it is hard for me to remember to take it easy. I try so hard for my illnesses to not interfere with my daily life, that I sometimes forget how fragile my body is. I am guilty of taking my health for granted at some points. Even with having severe Crohn's, and severe hepatitis, overall, I have been fortunate. I have yet to require major surgery, and my hospital stays have been brief. I've made it four months without any major infection, and I feel so thankful I've made it this far.

The whole idea of taking it easy has always been difficult for me, but I will continue to work on it. To remember to take a break every now and again, and to give my body the rest and care it deserves.

Myfortic

Or as I am now calling it, my kind of hell.  Day 9, and I still feel like complete garbage. Nausea, vomiting and exhaustion, oh my. I wasn't expecting the switch to take so much out of me, or to react so miserably to the new med. I've been doing my best to "tough it out". If I fail Myfortic, there is only one medication option left to try to control my AIH.

Humira and prednisone have been my lifesavers, even if now, my Crohn's is rebelling. I have started with pain in my ileum again, and now pain in my descending colon, which was inflamed during previous colonoscopies. Another big concern, is that I'm now going into 4 months on prednisone. My bones are not thrilled, nor are my docs. I will be on prednisone until at least October, making close to six months on a substantial dose. In. October, when we reevaluate my treatment plan, I will also be having a DEXA scan. It's also scary to think about what will happen to my Crohn's, when the prednisone is discontinued. It definitely has been helping to keep thing under control, even if I am currently having breakthrough.

For now, I hope and pray that the Myfortic works, and works well. Fingers crossed.

balancing

This past Wednesday, I met with my liver and GI docs. My LFTs refuse to normalize, and are still elevated. I was already on the highest dose of azathioprine that I could be on, so it was decided to switch me to another immunosuppressant, Myfortic. It is similar to CellCept, a more commonly used immunosuppressant, but is coated, and is easier (hopefully) on the stomach. Myfortic isn't as safe as a drug as Azathioprine, and comes with more side effects. Our goal is to get my LFTs normal, and maintain normal while getting me off the prednisone.

Luckily, the Crohn's is behaving, for the most part. It will be interesting to see what happens with the switch, as azathioprine is commonly used to treat Crohn's, while Myfortic/CellCept haven't. It will be interesting to see what role, if any that azathioprine has had with controlling my Crohn's. Hopefully for my sake, it has played a minimal role, so that nothing changes with stopping it. We are also nervous for when I decrease the prednisone, as that most certainly has had a therapeutic effect, on both Crohns and AIH.

My life at this point is a balancing act. Trying to stay upright, on both feet has been a struggle, and not without consequences. I have traded away my life in order to stay healthy.

Normalcy

Just hit 3 full months on prednisone. Have a minimum of 3 more months on it, and that's only if my LFTs stabilize. It will much likely be longer than that. I'm slowly starting to see the full effects of my total immunosuppression. Cuts, scrapes, blisters, all take so much longer to heal. I used to heal wonderfully, with few scars. Now, my body is riddled with small scars, from what previously would of healed perfectly in a couple of days.

I've gained ten pounds. I'm in amazement that even with maintaining 10mg of prednisone, I have only gained ten pounds. While I'm trying my best to keep the weight gain at a minimum, I'm happy that so far, so good. It is a constant uphill battle with prednisone, to keep the weight off. Previously, and again in this round, much of it is water weight. I feel so puffy and bloated.

The scary part of this new normal, is that I've yet to hit true remission. I had bloodwork done last week, and will be getting the results Wednesday. As of two weeks ago, my LFTs were still climbing, even with being on the maximum dose of azathioprine, and 10mgs of prednisone. I think a part of me is afraid of the long term implications. I hate that there is no end in sight of being on the prednisone. I'm worried about my bone health, and well overall health stemming from long term use. I'm anxious to see why my blood counts are at, with my previous blood work showing substantially lower than average white blood cell counts.

I want remission. I know I will never be med free in my life, (unless they find a cure), but I want to reach a point where I don't have to worry about bone loss. Where I don't have to worry about getting sick constantly, where I can start to think about getting pregnant, where I am not on three different types of drugs that all independently shut down my body's immune response, not to mention being on three at the same time.

This new normal, while slowly getting to be familiar, is not okay. I'm not content. I hate feeling so run down physically that I barely have time or energy to eat dinner when I get home from work. I hate how I feel, and am scared to death of the long term effects of these medications on my body. The fear alone is more than enough to hate this new normal.

Four

Last week marked my fourth hospital visit this year. I noticed changes in my urine, and felt out of it, and had an abnormal temp. Called my doctor early Monday morning in hopes of getting an office visit with him, but instead was politely told by the nurse to go to the ED, which is in the same healthcare system as my doc. My doc and the colleagues from his practice do daily rounds at that hospital, so with any visit, if need be, they can consult almost immediately.

Lucky for me, it's new resident season, and I had the joys of having a brand new shiny doctor, who confused autoimmune hepatitis with hepatitis C more than once. Don't get me wrong, I have many friends and colleagues that are physician, and typically have the utmost respect, but if you want to work in an ED, be sure to know the difference between viral and autoimmune diseases.

She ordered an ultrasound, for gallstones, even though I told her numerous times I had my gallbladder removed, and imaging done to ensure I had no stones in bile ducts previously. The ultrasound, showed an enlarged heterozygous liver, indicative of liver disease. No surprise there. She ordered only a basic hepatic panel and CBC and let me go after filling me 2000ml of fluid.

Unfortunately, I had missed the rounds of the liver team at this point, and was told that I was merely dehydrated and to follow up with my liver doc as scheduled, and get blood work again this week. My LFTs are still climbing back up, even with the increase of azathioprine. I'm anxious to see the results this week. I also was frustrated at her telling me that I need to drink more water. I have Crohn's disease. I can drink a gallon of water a day and still be dehydrated and it's so incredibly difficult to stay hydrated. I left upset, and frustrated and just done.

This incident is why I hate going to the ED/ the hospital. I spent over 8 hours in a gown in an uncomfortable bed, only to be told, follow up with your main doc. Back in March, while in severe pain, when my gallbladder wasn't functioning- I was told to follow up with my primary doc. I feel that having such a rare combo of diseases, or hell having either one, is typically way more complicated than what a typical ED doc can handle. It's why we see specialists in the first place. The ED is one of the worst places to get care for chronic diseases, yet any times we are forced to go there when our docs are not available. My friends and family sometimes insist for me to go when I don't feel well, or symptoms are amiss. I wish it was as simple as walking into the ED and having a medical problem solved, but unfortunately, it's rarely the case. It's frustrating, painful and wasteful in my opinion, and it really reiterates my dislike of rushing to the ED to get checked out.

Waiting

Lately I've been thinking more and more about dating. Sadly, almost every person I talk to, whether male or female has told me to not think about it right now- wait until you're healthy. 

I get that it's not something I should be focusing on. At the same time, I do not know when I will be healthy. To be realistic, I will never fit into the "perfectly healthy" category. I'm just so frustrated in general with the whole "wait until you're healthy" mentality. Wait until you're healthy to go back to school for your PhD. Wait until you're healthy to buy a house. Wait until you're healthy to go on vacation. Would the same people tell a cancer patient... Wait until you're healthy to live/enjoy your life? 

Having a chronic illness, or in my case, a couple, means that there may never be a "healthy enough" time. There is no cure, there is no "I Beat Crohn's" Medal of Honor, there is no " You're Crohn's free"(in most cases). 

I feel like the past two years of my life have been spent in a holding pattern, waiting until I'm healthy enough. I know it will be difficult, but with compromise, I think things will work. In terms of housing, I'm settling for a townhouse/condo, that can be easily rented out, if anything should happen. I have shelved my dreams of owning a cute little single family house for the time being, knowing that it will be difficult to keep up on, alone. I have also have compromised on my vacation plans, staying more locally, and buying travel insurance as needed. The only real area of my life that I haven't found the right balance of compromise on is dating. I'm not sure on what the right compromise is for it, but I do know that I'm not waiting until I'm "healthy" for anything else in life. 

The past week has been brutal. The increase of azathioprine has not helped whatsoever. My liver is ridiculously swollen, I've gained about 10 pounds in water weight, my fever is higher, I have lost my appetite and my urine is as dark as it was when I was admitted for liver failure two months ago. Figures it's a weekend, and cannot get in touch with my docs.

I just feel run down, but still function-able. I don't feel all that sick. I just know that inside my body is waging a war against itself. On Monday, I will get in touch with my liver doc. I had a few family members tell me to go to the ED, but frankly, I know I can wait the two days till Monday. I don't want to sit and be there for hours. They ultimately would have to consult with my liver doc/his partner who  also don't do rounds in the hospital on weekends. So I would most likely be admitted until they could track them down to do a consult. It's a hard place to be in. I know I'm in liver failure again. I'm not quite sure what the next step would be, since initially I responded so well to the treatment. I also live 45 minutes from the hospital(s) that both my GI/liver man are a part of. I have five hospitals that are much closer, not to mention cleaner, nicer and in better locations. It's a tough call. I don't feel like this is an emergency. I'm obviously surviving day to day. I will not let it go past Monday, or if something drastic changes, but I will try to enjoy my weekend as best as possible.

The past couple of days have been rough. I feel as if I am going through the motions. Get up, try to eat something so I don't throw my guts up by 8am. Get to work, struggle to find a comfortable position sitting, because my liver is so incredibly swollen, it hurts to sit for an extended period of time. Fight off nausea. Take a few phone calls, write a few emails, and try to stretch out the morning, before having to take another dose of medicine. Take second dose of meds, try to once again shove food down my throat before the nausea sets in. Avoid the lunch room, because smells make the nausea so much worse. Go back to my desk, struggle to find another comfortable position. Try to keep my eyes open. Do some more work, and rejoice when the clock hits 4pm. Get home, immediately change and lay down. Typically nap two hours. Try to find something to eat that doesn't upset my stomach. Read for an hour or so before bed, and then am asleep between 9-10pm each night.

It is SO incredibly difficult not to let illness overtake your life, but when you can barely make it through a day, the battle is almost over before it starts. 

Depending upon the next few weeks, I may try to see if I can work something out with my job, about working from home a day or two a week. I am hoping with the changes in medication that this will be completely unnecessary, but if my disease progresses, it may be one of the only choices I have left. I am hoping and praying and doing everything in my power, in order to aid in my recovery. What makes this difficult, is that in someways I am my own worst enemy. In order to ask for help, in order to ask for accomendations, in order to admit some form of defeat, in order to admit that I am not the person I once was, I have to overcome myself. I think the stark realization of the seriousness of my illnesses has been a slap in the face. I had such overwhelming success coming back from a severe traumatic brain injury, that I went in full force with my Crohn's diagnosis, being so incredibly confident, okay so albeit a bit cocky in that I had this battle in the bag. For the first couple of years, I did, and was even able to be medication free for a time. This most recent flare up and the additional diagnosis of AIH, has brought me back to reality, and shoved my cocky attitude in my face. I am not perfect. I am not a failure, and I cannot do everything alone. Which has been so incredibly difficult to admit. I hate asking for help. I hate feeling like a failure. 

The past three months have scared me. I now see that I cannot ignore my issues, and that even if I attempt to do the best job ever, that sometimes, life is out of my hands, out of my control. It has been one of the most incredibly difficult things I have had to do this far in life. I don't consider it admitting to defeat, but that I need help in going at this. It is going to be a long, life long battle, with sometimes no end in sight. I just know I cannot do this alone any longer. 

Got to visit my lovely liver team and GI doc today. The verdict is in- my liver function is failing again, and  things are getting serious. Bumping up my azathioprine to the highest dose, increasing my Humira to weekly and trying to stay on 10mg of Prednisone so I can at least hold on to some form on sanity through this.

My white (blood cell) counts were also abnormal, which is another thing to really keep an eye on as well. Could be from my autoimmune diseases, could be from the medications, either way, I'm much more prone to infection and getting sick.

I'm still processing this all. I'm frustrated, angry, and a bit emotional. Honestly, I'm worried. I hope that within the next three weeks my liver works overtime to heal, to get on the right track. I hope that my Crohn's will behave nicely, once I up my Humira dose. I just need time to process everything.

Breaking Point

The past three months have been hell. Looking back, I spent a decent part of 2013 in remission. Since  October 2013, I've been in one long flare up. I did have a month where I was feeling okay (mid February to early March), but besides that, my health has been shit (obviously). 

Constant pain and feeling like crap ages you. It wears you down, and sucks the life out of you. For the past three months, I've run a constant 99-101 degree fever. I feel always on the verge on getting sick, that my body is fighting a cold. In truth, it's simply fighting itself. I really hate complaining, but this is a miserable way to live. I've had my favorite foods, drinks, and activities (running, working out) taken away from me. Eating has become a chore, and almost fear inducing. Throughout the past ten years, post TBI, I have been so optimistic, so positive with whatever life handed me. At this point, I'm struggling. I hate living doctors appointment to appointment, hoping that the next treatment will lead to remission, or at least some form of relief. 

Most of all, I want my life back. I want to be able to go out and run 5 miles, and celebrate with an ice cold beer. I want to have the energy to go out with friends, to be able to eat out without fear of having an accident or end up in the bathroom all night. Again, I HATE complaining, but we all reach our breaking points eventually. 

kids.

Something that has been weighing on my mind a lot lately, has been the subject of children. As a child, I had zero interest in playing house, playing mommy or babysitting small children. I was more interested in playing outside or reading books. Even throughout my teen years, I refused to babysit and the thought of being around small children made me anxious, and want to run.

I haven't really shared this with many people, but this topic has been in my mind the past few days...

Around the age of 21, my feelings did a 180. Call it the early rumblings of a biological clock, or maybe my fear subsiding, children became a lot less frightening and perhaps even cute at this point in my life. At this time, I was in a serious relationship, and close to 22, had an unplanned pregnancy. At the time, I was overjoyed, and extremely excited. I was fascinated with motherhood, and my fears quickly fell away. Though not expected, I was in the middle of grad school, and was in a stable relationship, and would be able to fully financially and emotionally support a child. I was extremely ill through out the pregnancy, ending up in the ER biweekly for dehydration. At 16 weeks, I felt much more ill, and proceeded to once again go to the ER for what I thought was dehydration. I found out that I had had a miscarriage, which was earth shattering.

The next few weeks were a blur, and the months following were so emotionally taxing. My relationship fragile as it was, before the pregnancy, ended, and resulted in me moving back home with my mother, and trying to struggle through the spring semester of grad school. It was during this time, that I was initially diagnosed with Crohn's. So many thoughts consumed me- if I had been diagnosed earlier would my baby survived? Why wasn't this caught earlier? Can I even have children? This was one of my darkest times emotionally and the thoughts still occasionally haunt me.

With each passing year, I find myself wanting children, to be a mother, more and more. I know I'm young to start thinking this way, but at the same time, I realize that it will be quite the undertaking for me to have children. Even with the AIH diagnosis, I still will be able to have children. I will have to have an extremely planned pregnancy, with close and careful monitoring. I also will have to make sure I'm healthy enough myself in order to sustain a pregnancy (in remission from both diseases).

 I have asked my medical team if my illnesses would prohibit me from having my own genetic children, and there should not be an issue, but if there is, there are many many other options. There is so little research on Crohn's and pregnancy, and even less on AIH and pregnancy. I have yet to find a single study/case report/ anything on Crohn's, AIH and pregnancy, and my GI kindly informed me that he would gladly write a case study on me one day, to be the first of its kind. 


I'm not looking to have children tomorrow, or even next year. It may even be ten or fifteen years down the road.  There is no time line, no magic age, no impending doom. I also know while extremely unlikely, I may not be able to physically have children. This will not stop me from having children, biologic or otherwise. I want to be able to half the mother the mom has been for me. I want to love, teach, provide for and nurture. For someone who once gagged at the thought of playing mom, I find myself in awe of watching dads and moms playing with their kids on the beach, squealing at pictures of my coworkers children, and occasionally daydreaming of one day experiencing parenthood. I know that I have such a long way to go, and that's fine with me. Plus this girl has got to get herself healthy, finish school, buy a house and ya know, maybe find a significant other and have a stable and loving relationship before the thoughts of actual parenthood cross my mind...

25

Tomorrow, I turn 26. Needless to say, 25 has been far from what I expected. I expected to run my fifth Broad Street Run, complete a full marathon, run 3 half marathons, and a handful of 5ks. I expected for my health and job to stay the same, which was fine with me. On the bright side, I got an awesome promotion at work, one I wasn't expecting. I finally, after three years, walked in graduation for my Master's. I've worked on two published studies, and have learned so much in my short time in my new position.

25 started off with a partially torn Achilles, and severely inflammed tendons and ligaments in both feet and ankles. Three months of physical therapy later, I was back to new. A month or so later, I noticed that my Crohn's was becoming more active. For most of 2013, I was not in total remission, but feeling pretty decent. Around November, when things started to drastically change, knew it was time to tackle this full force.

By February, I was able to start Humira, and thought it was smooth sailing. Late March I ended up in the hospital with a non-functioning gallbladder, with surgery in April. May brought another surgery, acute liver failure, and a third life changing diagnosis (the first being my TBI, second Crohn's) of Autoimmune Hepatitis.

Life has sure kept me on my toes, and I can say that without a doubt, 25 was my best year yet. Yes, it's been crazy, and yes I've spent way too much time in doctors' offices, and one too many nights in the hospital. In return, I've gained so much appreciation for my life, for the opportunities I have been given. I finally am feeling comfortable in my own skin, and appreciative of myself, and that in itself has been more than worth the past years pains.

The joys of Prednisone

Out of the 50-plus medications I have taken over my life time, prednisone tops the list of being the absolute worst. Between my TBI, Crohn's and AIH, I've become no stranger to relying on medications to survive.

Prednisone, is one of the simplest medications, with hundreds of uses. It often tops lists of most essential drugs, and is life saving at times. Unfortunately, out of any drug I have taken, it has the worst side effects. It leeches calcium from bones, can raise blood sugar, blood pressure, increase or decrease heart rate and can even cause seizures. It can increase bruising (the past couple of weeks, I constantly look like I got into a bar fight), can cause depression, unusual thoughts, feelings or behaviors (more on this later), muscle pain or weakness, numbness, tingling of burning pain, and one of my favorites, rapid weight gain, swelling in your hands, ankles or feet.

Sure many other my other medications have much more scary potential side effects, like increased risk of melanoma, increased risk of cancer overall, but the incidence of these side effects are under 1%. Prednisone's side effects happen much more frequently, and have much higher incidence rates.

In other words, while taking high doses of prednisone, I become a rotund, raging bitch covered in bruises. Soooo totally sexy. The weight gain, bruising, numbness, heck I even broke a bone on my last course of long term prednisone, I can deal with those side effects. It's the mental effects I cannot deal with. Having suffered from generalized anxiety disorder, OCD, PTSD and depression for the past ten years, I am no stranger to mental health issues. Through years of therapy, and finding the right cocktail of medications, 95% of the time I feel fantastic. Though I have a safety supply of Xanax as needed, before prednisone, I had not had to take one in over six months. Like with my previous course of long-term prednisone within the first week, I noticed my anxiety come out with a vengeance. I am short with people, have mood swings (hello crying for no reason at all), and the persistent anxious thoughts. I turn into a Jekyll Hyde, and feel like I have no control of my thoughts or emotions, I feel grateful that at this point, I know what to expect. I know that I can get through this, and these are not my thoughts, that it's not who I am. It is so incredibly scary though, to know that one simple, life saving pill can cause so many issues.

Unfortunately prednisone is the drug of choice for almost all autoimmune conditions. It simple, in that it works. It's cheap, effective and easily obtained. Unlike the alternative steroid used in UC/Crohn's, Entocort (a steroid that less system and targets the GI tract) costs about $1500 per month supply. Many insurances do not cover it (for prednisone is available at a much cheaper cost) and even when they do, the co-pays can still run up to $800. The side effects are that of Prednisone though not to the same magnitude. The efficacy of Entocort is also sometimes not as great as Prednisone, so that's another deterrent for its use.

When I see both my GI and liver doc 7/15, and depending on my blood work, I'm going to ask to be taken off. My mental health, has what kept me sane through the physical pains and ills of Crohn's, and AIH. It has what kept me going, kept me positive, kept me sane. Now that it's altered, I feel worse physically as well. I just can't do it any longer, and I know that as a patient, I have a choice. Fingers crossed I'm healthy enough to get off and that my liver plays nice.

Nashville

Sorry for the lack of updates, I'm at a conference for work in Nashville until Thursday. I'm exhausted, but trying my best to maintain. Since starting Humira again on 6/16, I've noticed almost no improvement. I'm disappointed. While on Humira the first time, I noticed a drastic improvement within a few days of the loading dose. Maybe it's because I did not have a loading dose this time around, or that my disease has progressed. I have appointments to follow up with my GI and liver doctor July 15th. I will be able to get in two more doses of Humira during that time, and will also be getting blood work done to see how my liver is tolerating it.

The heat and humidity have also made this trip a bit torturous. Each night, my ankles and knees are grapefruit sized, along with my hands being extremely swollen. Enough complaining for now... It's time to fit in a short nap before more presentations!

Hi Mom!

While I love my mother dearly, and often can never find the right words to describe her, I can say that she is not technology savvy. She can change her own oil, re-finish cabinets, use a rotatiller, but when it comes to computers, she can check her email, and that is about it. Imagine my surprise this past week when I get a text of "Hi honey, I read your bio and I love you so much" ....my bio? "Your bio online where you post about different subjects".. Que lightbulb moment.."Oh! My blog!"

We then had an in depth discussion, of how she has been able to see a totally different perspective of my life, of what I have been going through. For the past ten and a half years (since my TBI), she has always played a very active role in my health care. The past three years, since starting my journey with Crohn's, has been no different, even though at the time, I was already an "adult" at 22. She has sat in on almost every doctors visit, taken me to each test, each scope, each surgery. She has played the role of patient advocate, Nurse Rachet when I was being hostile, insurance extraordinaire, therapist, friend, and mother.

When people ask why I started a blog, or why I would want to share my feelings with the whole world, besides being therapeutic for myself, it also raises awareness. Whether it be to give my mom a better understanding of what I'm going through, or for my friends to follow my progress, or for those just diagnosed with Crohn's or any other chronic disease. I have met some absolutely amazing people through blogging and social media, from all over the country that I can relate to. While Crohn's is affecting more and more people, is still is not extremely common. Autoimmune Hepatitis is much more rare, and I feel like the only person alive that has had a severe TBI, with both Crohn's and AIH (AIH is more commonly seen in those with Lupus, Rheumatoid Arthritis and Sjorens, and seldomly UC). I know it can be so difficult to relate to, and hell sometimes I struggle being in my own body. Even just for my mom's sake, I hope this can serve as a tool, for her to be able to understand what I'm going through a little bit better. If it helps other people, that's great too. Now if only I could help her understand technology a bit more...

Brutally Honest

This is going to be brief.

Today was the first time in two years that I have had an "accident". Well, I actually had two by 8pm. I'm not going to sugarcoat it any longer. I lost control of my bowels, and defecated on myself. Totally glamorous and totally sexy for a 25 year old girl.

In other words, I shit myself. Why am I being so brutally honest? Crohn's is not a sexy nor glamorous disease. Crohn's is a disease that takes away all dignity. People continually post on facebook pictures of mastectomy scars, and beautiful bald heads from chemo. On the other hand, I have seen in numerous groups on numerous posts of pictures of ostomy bags, of resection scars, comments that read "totally disgusting". I have friends who pictures of their ostomies get reported for vulgarity.  It is heartbreaking and defeating to witness this on the internet. The stigma of bowel disease is unsettling I a time where typical over sharing is a-ok, and a social norm.

I want to help break this vicious cycle of embarrassment, of stigma, of hesitancy. I am Nicole, and today I had two accidents. I also went to the bathroom over 20 times, and managed to vomit twice. Crohn's may be winning at the present, but I'm not going down without a fight (and being brutally honest while doing so).

happy happy happy... For Humira!

I got cleared to go back on Humira for my Crohn's! I've been off Humira for two and a half months. In that time, my Crohn's has come back with a vengeance. It's spread through out my entire colon, and part of my small intestine. I've been in pain, and the urgency and frequency of going was the worst since around the time I was originally diagnosed.

I'm anxious. My immune system is already in the pits from the prednisone and azathioprine, and adding in Humira will only multiply the immunosuppressive effects of the two. I also have substantially upped my risk for certain forms of cancer, that have been associated with the combination therapy of azathioprine and Humira (and other biologics). I'm continuing with biweekly blood work to monitor my blood counts, and my liver function, for another factor in the equation will be how my liver reacts to the Humira. There is very little research on Autoimmune Hepatitis to begin with, let alone when occurring in someone with Crohn's. To try and find research on treatment/therapy of the two diseases together has been impossible, which adds a bit to the stress.

I'm taking it one day at a time. It's all I can do. I got to see my favorite doctor, my GI, this morning. He has helped this whole situation manageable. Live-able. Tolerable. Am I scared of what the future may hold? Am I worried about the long terms effects, of well, everything? Absolutely. Having someone in your corner though, helping to make major medical decisions, to have someone who will pick up the phone 24/7 in case of emergencies, and who will advocate in times of need. I will be following up in a month with him, and seeing my hepatologist the same morning. Fingers crossed this works, and my liver stays well behaved!

Stage 3: Bargaining.

I've officially hit the 3rd stage of grief, bargaining. I've caught myself doing this for the past week or so.

Bargaining the "third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live. "

I often say hey, it sucks, but at least I have great insurance, or at least I have a great job. I find myself saying and thinking about bargaining multiple times a day. I have a minor in psychology, and have taken numerous psych courses, but it still surprises me how innate the stages of grief really are. They unfold without cognition, without thought, and often without plan. Some may get stuck in anger, while others depression. I'm scared to death to hit the depression stage.

People question the Kubler-Ross model of stages of grief, especially applied to things other than death or dying, not to mention diagnosis of a chronic disease, with no cure. With my Crohn's diagnosis, I had known for months what was coming. I had had bowel issues for quite sometime, so it wasn't surprising when I was diagnosed, especially with my family history. I had months to think research and plan. With the Autoimmune Hepatitis, I feel like I was slapped in the face. I had been told about a year ago that I had mild Nonalcholic Steatohepatitis, but that it wasn't off too much concern. This past April, when I was having gallbladder issues, I was told that my liver problems were due to my gallbladder not functioning and that after surgery, my liver would normalize.

Much to my surprise, instead of my liver healing, I went into acute liver failure. I was told that I had a disease, that left untreated, 90% of patients die within the first year. A disease that, 60-70% of patients will require liver transplant within 10 years of diagnosis. I know these are just statistics. I have an advanced degree in the study of diseases, and calculate attack rates, case fatality rates, odds ratios and biostatistics daily. Adding in Crohn's, I'm at a much greater risk of complications, and frankly, death. Does it scare me? Absolutely. Will it stop my life? No, it won't stop my life. It will take time, and maybe a decent amount of it, to cycle through all five stages of grief. I will try my best.

el jefe del hígado

Or in English, the boss of the liver. So had my last biweekly date with my hepatologist, we are now graduating to monthly appointments!

So, like as I expected from my liver biopsy pathology report, my liver is SCREWED. The biopsy has confirmed, that I've had long term, severe inflammation caused by Autoimmune Hepatitis. I'm so so incredibly lucky that my GI saw my lovely cup o' urine the day of my colonoscopy. It's what caused me to get an immediate appointment with the liver doc, and we were able to catch the early stages of acute liver failure. If I had waited even a week or so longer, I would mostly likely progressed into total liver failure, and required a transplant.

I love my liver man for his bluntness, and openness. Within ten years, I most likely will need a transplant. I have at least one full year of monthly visits, blood work, follow up and heavy duty medication to send this puppy into remission. I'm happy because I was able to taper down to 10mgs of prednisone, but it also means I have to double my dose of azathioprine... Killing my immune system further (and increasing nausea and hair loss). I am meeting with my GI Monday, and will be coming up with a treatment protocol for my Crohn's.

My saving grace, is that my LFTs continue to come down. Even when they reach the normal range, I will still have to continue meds for at least a year. I can live with it. My brain has just been so over whelmed with everything going on.

dating.

I've been wanting to write about this subject for the past few weeks. Since my initial Crohn's diagnosis, in April 2011, I have yet to have a serious relationship. From the time I was 14, throughout college, I was the girl that always had a boyfriend. In my senior year of college, I had met and started to date a guy who I thought was "the one". We had talked marriage, and were planning for our future together. We had gotten a lab puppy together, and things were pretty decent.

Unfortunately, after moving in with him, I started to realize that he was a completely different person, that the past year of our relationship was more or less a charade. Part of me believes that the stress during the period (December 2010ish), and our volatile breakup had brought about my Crohn's or at least brought upon my first flare up which led to my diagnosis four months later.

The past few years have been difficult, trying to finish my Master's, working full time, and trying to keep my health under control. The first two years I was adamant about not dating, primarily because I had never been single for a decent amount of time before, and secondly, because I was determined to not to get distracted. Another year passed, and though I went on a hand full of dates, nothing ever worked out.

At this point, I feel like I'm in a crappy situation. Part of me wishes I had someone to be there for me throughout the past few months. I want someone to be able to vent to, to be apart of my support system, to pick me up when I fall down, and to hold me, when I can't hold myself together. I realize this is fully selfish though. I look at myself, and I know I would not be able to be a decent girlfriend at this time, or hell, even a decent friend. I cannot guarantee that I could be there for someone in times of need. Right now, living day to day. I feel like I cannot plan, and cannot think ahead. Instead of planning ahead, I'm focused on getting out of bed each morning. I'm focused on being able to stomach breakfast, and what could I make for lunch that would be safe. I'm focused on making it to the bathroom, hoping to God I don't have an accident before I make it in to work. It takes so much energy just to survive, that even thinking about living is draining.

How would this be fair to another person? It's not. I often get told that I'm in the prime of my life, that if I don't meet someone now, I never will, and that I will be single forever. At this point, I can't focus on that. I need to focus on getting and staying healthy, to survive this next year of aggressive treatment, even if it is alone. Would I love to have someone to come home to at night? To sit with me on my bad days, to take care of me? Absolutely, but I realize at the same time, those are not the reasons to start a relationship/get involved with someone for the sake of being with someone.

This has been one of the most difficult posts to write. I am so torn.

running

In high school, I started running track freshman year. It was mostly to stay in shape for soccer, but after my TBI sophomore year, it became my year round obsession. The only issue, was that I refused to run anything longer than 2 miles. I was a sprinter, queen of the 200m. Somewhere in senior year, I started to run the 400m hurdles after it was noticed that I some sort of endurance. I still skated my way through, somehow always managing to get out of the 3 and 5 miler days.

Somewhere in college, I started used to use the treadmill. I went to college in West Philadelphia. At the time, I was a naive beach girl, who didn't exactly feel safe running through the streets of West Philly at 10pm (I loveeeed going to the gym late). I realized that I could run 3 miles. Heck I even did 15 miles a couple of times. I soon began running longer distances, and finished my first half marathon my senior year of college.

Running, is my therapy. After five years of neuropsychological therapy, and talking to my fair share of psychologists, psychiatrists, neuropsychologists, I was therapied out. I still see a psychiatrist for my anxiety medications, but I get nothing out of seeing a therapist/psychologist. My anxiety, PTSD, and depression are here to stay. For the most part, they are under control. The past few weeks I've had a resurgence due to the AIH and Crohn's flares, but I've been managing. When I was  first diagnosed with Crohn's three years ago, I found running to be so therapeutic. I can lose myself in the music, in the miles (I have a terrible habit of not realizing how far I've run), and have a total mental vacation.

Unfortunately Crohn's and now AIH have interfered with my running. I have lost track of how many races I've had to pull out of. I've broken my leg after being on steroids long term, from running, and my joints lately have been screaming in pain once I hit 3 miles. I've pulled out of runs due to surgery (this year, the Broad Street Ten Miler, the Nike Woman's Half Marathon in DC, the Odyssey Half Marathon in Philly), due to being so dehydrated, and just plain sick.

It's hard finding the right balance. My mind needs me to run. My body, on the other hand, does not want me to run whatsoever. While I love classes at the gym, such as Yoga, or Body Pump or spinning, I do not get the same relief, or "runner's high". The only thing that can come semi-close has been swimming. Unfortunately my current gym does not have a pool, and at this point, I really don't want to switch for numerous reasons. I have been doing my best to listen to my body. After my gallbladder surgery, I could not run for 6 weeks, and I'm at week 7. I have been running this past week, but have limited it to maximum three days a week, and three to five miles each run. I'm going to try to keep to that schedule, and add in other workouts.

My body is not what is used to be. Though I'm 25, well a month from 26, my body is far from that of a healthy 25 year old. I have to remember this, and try my best not to overdo it, since I'm fantastic at being overly ambitious. I have the tendency to over do it, to push my body to its limits and then some. I'm going to try my best..

happy dance!

Just received my blood work results from my LabCorp Patient Beacon. I think I would be insane without it. In most states, as a patient you can register with LabCorp to access your Patient Beacon, an online portal with your lab test results. After your doctor views the results, they are released into the Beacon. For me, this has been a life saver, with having to switch doctors numerous times, and also for the sake of my sanity.

As of June 2nd, my LFTs are significantly lowered, meaning I am responding to treatment!!!!! Unfortunately, I will most likely have two more years of azathioprine (the typical regiment, after induction of remission). At this point, my GI should feel comfortably enough to start treatment (hopefully Humira again) for my Crohn's, since that has been rearing it's ugly head this past week. I should also be able to taper my prednisone again, to 10mg this Wednesday. I'll know more Tuesday after my appointment with my hepatologist, and know even more next Monday, after I follow up with my GI.

This has been the first time I have not gained weight while on prednisone. Heck, I'm loosing weight but that is due to the Crohn's and crazy nausea from the azathioprine. I have been suffering from insomnia every night, and my anxiety is out of control, so I haven't escaped the side effects of prednisone completely. I'm just so relieved my numbers are coming down!

Liver Biopsy Results and Feeling Angry

Not good. So not good.

So my hepatologist and I were waiting for specialty staining to be completed on my liver biopsy done on 5/13. Preliminary results showed Autoimmune Hepatitis, which along with my clinical signs and symptoms landed me my diagnosis. I received a copy of my pathology results because my hospital has a nifty patient portal.

I had an original liver biopsy done 4/16, when I had my gallbladder removed laparoscopically. I had received a copy of those pathology results from my surgeon and brought that to my new GI, and then to my hepatologist. The results were limited to two sentences, noticing severe inflammation, but that was about it. The report I received today, is a massive paragraph. Previously, we thought that I had mild fibrosis, and moderate hepatitis (inflammation of the liver).

It's way worse then I imagined, but want to wait until I speak to my hepatologist next Tuesday about it. I also had blood work done yesterday, and I'm anxious to see how my LFTs have been, now that I tapered down to 20mgs of prednisone. Things that worry me: low grade fever is still hanging around, my urine is getting darker, I have lost my appetite again, and so sore.  My body is in the midst of a war at this point... I don't necessarily know if I am imagining my liver get worse, or if  I'm being overly aware of my symptoms. It's also been difficult since my Crohn's is really misbehaving, and some of the symptoms overlap, like loss of appetite, pain and fever. The urine thing has me a bit worried, for it hasn't been this dark since my hospital stay. So gross, I realize, but in terms of liver and gastro diseases, I'm used to being overly aware of what my body excretes.

I'm 25 years old. Seeing phrases like severe hepatitis and cell necrosis are not exactly comforting. Again, besides feeling a bit deflated, I also feel quite angry. I guess I'm fully at Stage 2 of Grief: Anger. This is a pretty decent explanation I found:
-As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family.  Rationally, we know the person is not to be blamed. We feel guilty for being angry, and this makes us more angry.

I haven't reached Stage 3 yet, which is Bargaining. I'm not done being angry yet.

Counting geese instead of sheep

Started off today with four hours of sleep. Next week when I see my hepatologist/GI team, I'm going to ask to be be put back on a real sleeping med. From my TBI, I have disordered sleeping, and do not naturally go into the same sleep cycles as most people. I had tried Ambien, Sonata, Lunesta, trazodone, gabepentin, and Soma all at different times. I found that while Ambien worked best, I would sleepwalk/sleep eat/sleep try to leave my house. The others worked miserably and had even more side effects. For the past few years, I've been taking Remeron at night, and it's been fantastic until the past week or so. Now, I feel lucky to get four hours of sleep. When I was previously on long term Prednisone, and even on Entocort (another steroid), I suffered from terrible insomnia. It's gotten to the point I cannot function at work, and I know that, temporarily I need help sleeping.

I also managed to hit and kill a goose crossing the street on my way into work, just realized how thin my hair has gotten, nausea has come out in full force, new bruises covering my body, and finally if all that wasn't enough, I have a nasty sinus infection on top of everything else. Oh and I won't have hot water for another couple of days (my hot water heater broke on Friday).

Hopefully the week only goes up from here. Going for my biweekly blood work tomorrow, and should have the results by Friday. Hopefully my LFTs have come down far enough that I can go back on Humira, and taper further off the prednisone. I also am semi-excited to get my hair done tomorrow night, and to try to do something with it to hide the hair loss. I really should call my docs about this infection, but want to try to hold off to see if I can fight it on my own.

My victory of the day was getting to the gym before work. Since I was up at the crack of dawn, and bored I went to the gym, and managed to somehow run three miles, and do a modified leg day. I probably pushed my body way too hard but it felt so good, and therapeutic. I may pay for it tomorrow but I needed the hour workout to clear my mind.  Here's to hoping that tomorrow is way better than today.

Woke up yesterday feeling pretty crappy. Severely swollen lymph nodes, mild fever, sore throat, achey and out of sorts. Looks like I need to give my GI a call tomorrow morning, since he was already concerned that after only a week on azathioprine my blood tests came back funky. My hepatologist did not order the TPMT blood test (which shows your body's ability to metabolize azathioprine/6mp. My GI has written me a script to get it done, along with a CBC, and of course my LFTs. I was planning to hold off until next weekend to go, but after this will be moving that up to hopefully Tuesday. 

It's never ending. I just want a break. I want my life back. 

How are you?

I feel like a monster. Mentally the past couple of weeks have taken a toll on me. I am so incredibly tired of people asking how I am, and how I am feeling. I am sick of having to lie, or even worse, my most common reply, “hanging in there”. I want to say I feel like f-ing crap. I want to say, I feel lonely, I feel agitated and frustrated. I want to say I feel pissed as shit today.

I’m tired of going into work with a smile on my face every day, pretending to hold on to some semblance of normality. I am also beyond tired of hearing- “You poor thing”, “You’re so young!”, “It’s so sad”. One of my absolute favorites is “Haven’t you’ve been through enough?”

I get that I should be thankful that people genuinely care and are concerned. I am just so frustrated. I am frustrated because, yes, I am young. Yes, I had a traumatic brain injury ten years ago, was diagnosed with Crohn’s Disease two years ago, and now diagnosed with Autoimmune Hepatitis. Yes, it is sad, because my health has been ripped away from me, my foundation crumbling, while I should be enjoying life. Instead I am worried about next week’s blood work. I am worried that I have run out of treatment options for my Crohn’s, and that my body is no longer responding to medication. I am worried that I may never be able to have children.  I am worried that within ten years, there is a strong likelihood I will need a liver transplant. I am worried because my joints are already damaged from chronic inflammation, and I am only 25. With all these worries, it is hard to just answer “I am okay.”

With the feeling of worry, also comes the feeling of being pissed. Why should I be worrying about things only those in their 70s worry about? Why should I have more worries about my body than my grandparents in their 80s do? I am pissed as shit that my hepatitis and scaring of my liver is worse than those people who have been alcoholics for fifty years, or those that have viral hepatitis from engaging in high risk activities. I ran half marathons, ate paleo, and totally organic. I indulged in the occasional bottle of wine, but never used an illicit drug. Being a public health fanatic, I have always had safe, protected sex. How fair is it that my liver is in worse shape than many people who have Hepatitis C or Hepatitis B or were raging alcoholics for decades? How is it fair that crack addicts and heroin junkies have less health issues than I do? I have worked my ass off to stay healthy, and to live a productive life, yet at this point, I can’t seem to help myself.

I haven’t figured out the right answer to “How are you?” I may never. For now though, I am going to be honest. If others cannot handle my response, or it makes them feel uncomfortable, so be it.

Hepatitis?!

According to my great friends at the Mayo Clinic, Autoimmune Hepatitis is

"inflammation in your liver that occurs when your body's immune system attacks your liver. Although the cause of autoimmune hepatitis isn't entirely clear, some diseases, toxins and drugs may trigger autoimmune hepatitis in susceptible people, especially women.

Untreated autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually to liver failure. When diagnosed and treated early, however, autoimmune hepatitis often can be controlled with drugs that suppress the immune system.

A liver transplant may be an option when autoimmune hepatitis doesn't respond to drug treatments or when liver disease is advanced."

What AIH is NOT...

- It is not viral

- It is not labeled A, B or C

-It is not communicable... I did not get this from someone, nor can I give it to anyone

-curable

AIH is most common in women, those with other autoimmune conditions, and younger people. Lucky for me, I get not just one autoimmune disease, but now two. AIH is more commonly seen in those with Ulcerative Colitis over those with Crohn's, but since I love being an anomaly, it fits. Speaking of fantastic news... I also received the results of the biopsies from my colonoscopy on May 8th. Previously, my Crohn's was strictly located in my terminal ileum. Like in my previous scopes, my doctor took 20 plus biopsies from my ileum through rectum. Unlike in other scopes, every single specimen was abnormal, including specimens from my colon. I now have ileocolonic disease, and it is spreading.

Fortunately similar drugs are used to treat both AIH and Crohn's. Treatment for AIH is limited to prednisone and Azathioprine. Crohn's has many more treatment options for inflammation (even if I have exhausted many of them). I have been off of Humira for almost two months, after stopping it before my gallbladder surgery. Right now, I am taking strictly prednisone and azathioprine waiting for my LFTs to normalize. I will be starting to taper the Prednisone, and may have to adjust the azathioprine to make up for it. I also will hopefully be able to start back on Humira once my LFTs stabilize. For the bare minimum, I will have to take azathioprine for two years, for the AIH. I am thrilled that both of my doctors hate prednisone, and already have a plan for tapering. I do not do well whatsoever on prednisone, mentally or physically and I am happy that we are on the same page for that. I also get to follow up with my doctors every 3-4 weeks, along with concurring blood work.

When it rains, it pours. Lucky for me, I put on my wellies and jump in...

always a puzzle

Tuesday morning (May 13th), I still had yet to hear from the hospital where I was going to get my liver biopsy done. I had called before I left for work, but the same day surgery floor was still adjusting schedules, and that I would receive a call back within an hour or so. I threw an overnight bag in my car, and headed into work. Fifteen minutes after arriving to work, I then received a phone call that I could be fit in for a biopsy, and asked how soon I could make it to the hospital. I also was struggling to coordinate times with my mom, seeing that I would need a ride home from the hospital after the procedure. Also adding to the complexity, is that the facility is mid-way between my house, and my parents house (roughly an hour drive for each of us).

The plan was for her to bring my grandmother with her to the hospital, so my car would not be left there overnight. Once I arrived, things progressed pretty quickly, and my doctor had also ordered even more blood work before the biopsy. I was brought down to interventional radiology, pumped full of proposal, and was sent to recovery. The entire procedure took less then five minutes, and was virtually painless.

I was sent back up to recovery, where I would remain laying down for four hours before being discharged. Unfortunately, it wasn't that simple. My blood work which was performed while I was getting the biopsy, was "alarming". My LFTs were close to 900, my bilirubin was increased, as well as many other markers for severe liver dysfunction. My doctor wanted to admit me overnight for observation, as well as to run more blood work.

Wednesday morning, I had over twenty tubes of blood drawn. My mother had left the night before, with my grandmother, but was back with me by 9am. At this point, we were waiting for my hepatologist to round. I had the pleasure of explaining my story/ prior medical history to an intern and resident, and within the hour my hepatologist came by. He had just come from looking at my biopsies with the pathologist. Preliminary results showed what he expected, Autoimmune Hepatitis, with moderate to severe fibrosis, and stage 3 liver disease.

It was decided to start a concurring treatment of Prednisone along with Azathioprine, which is the most common, and basically only option for treatment of AIH.

AIH

So, if my body didn't hate myself enough as it is, I've been diagnosed with another autoimmune disease. I have developed Autoimmune Hepatits, which is more rare then Crohn's, but is more common in those with pre-existing autoimmune diseases. I'm still trying to wrap my head around the activities of the past few days, including a lovely mini vacation (barf) in the hospital.

I'm exhausted and my body is rebelling, especially since I started two heavy duty medications to get this under control. Don't worry I'll give a full play by play once I'm feeling a bit better.

Thanks for all your love, support and concern during this time. I can never say enough thanks, and how much I appreciate it.

waiting game

so my first set of bloodwork from Friday has come back. I'm waiting for my copy of results to be made available online. I did receive a phone call from my hepatologist, wanting me to come in for a liver biopsy ASAP... As in tomorrow or Wednesday. If I can't get put on the outpatient schedule, I will be admitted for "observation", and sent for s a biopsy that way.

I'm itching to see what my LFTs were to push for this. I had two biopsies removed during my gallbladder surgery, and on Friday when I met with the hepatologist he was going to try acquire the slides/ any additional info. Apparently there isn't time to wait and try to see if the other hospital still has them.

I get all of my bloodwork done through LabCorp, which has a nifty tool called Patient Beacon. If available in your state, you can access all of your lab tests/results done through LabCorp, within 24-48 hours of your doctor reviewing the results. Since my doctor's phone call, I have been checking incessantly. I wish I had asked my doctor what the actual number results were, but at the time, I was thrown off. Working in communicable disease, I deal with laboratory testing/ tests every single day. I know that in this age of Dr.Google, that people can be obsessive with things they find online. Part of me just wants to be an informed patient, aware of what is happening to my body, and to be prepared when decisions have to be made.

A nurse from the hospital just called, and gave me a number to call tomorrow morning to see if I'm on the procedure list. Until then, I'm hoping to keep my anxiety at bay, and relax the best I can.

It's been a crazy week. Got blood work done last Saturday morning, and by Monday afternoon received a frantic call from my GI. He called and was extremely concerned about my LFTs. In just about a month, my AST/ALT levels jumped from the mid 200s to the 600s. We were expecting them to normalize after my gallbladder removal. I had initially scheduled a hepatologist appointment for early July (the first available), but my GI said he would call and get my appointment pushed up to next week.

Thursday, arrived at the same day surgery center. My GI recently switched facilities, and it was his first day doing scopes at his new hospital/surgi center. Things were a bit hectic. After waiting 30 minutes after check in, a nurse gave me a clean catch container for a urine specimen. I managed to collect a specimen, yet could not find a nurse to give my container too. My GI came out to talk and immediately noticed my urine container, and was quite alarmed with my sample. He called the hepatologist on his personal cell, and managed to get me an appointment the next day, Friday. The colonoscopy went well.

My new hepatologist is concerned. I immediately got blood drawn for repeat LFTs, and another test. I was to immediately start a 24 hr urine specimen collection, and to also get about 30 different blood tests today. He was also going to try to obtain my liver biopsies if the hospital still had them, as well as full pathology notes. Best case scenario, is that it is a viral infection such as Epstein-Barr manifesting in my liver. Worst case is autoimmune hepatitis or Wilson's disease. I have been tested a few times for each viral hepatitis, and have been vaccinated for A and B, so those are off the table.

Working in infectious disease epidemiology, I have a decent understanding of viral hepatitis. I am used to seeing multiple lab test values, and LFTs for those with chronic, untreated hepatitis and my LFTs are much worse. I'm just hoping that within a couple of days we get results of my blood work and figure what is causing my liver to fail.

Chopped Liver

I'm miserable tonight. Maybe it's due to the fact that it's the weekend of the Broad Street Run in Philly, which I was supposed to run. It's the second consecutive run that got cancelled when I found out I was getting surgery. Meeting with my surgeon on Wednesday, she was adamant about waiting at least another 2 weeks before attempting any type of "mileage". She reiterated the point by showing me pictures of herniated abdominal wall from people who rushed recovery.

After meeting with the surgeon Wednesday, I followed up with my GI today. We went over the results of my liver biopsies that they took during my gallbladder surgery. I am once again a medical anomaly, and have a form of liver disease typically seen in obese 50-65 year old women. I do not fit into any of the risk factors, and really are unsure of what has caused my liver to progress this far in disease, at my age. He referred me to a great hepatologist, who can hopefully pinpoint why my liver has become diseased, and how we can treat whatever is going on. I was originally diagnosed with Nonalcoholic Fatty Liver Disease. This progressed first to Nonalcoholic Steatohepatitis, and now I have fibrosis. The fourth and final stage is the cirrhosis. It is extremely rare to have someone who is physically fit, under the age of forty with no history of diabetes, hypertension, viral hepatitis or rapid weight loss to develop fibrosis. I unfortunately am a rare case. At this point it does not look evident that it was drug induced, but it may be an extra-intestinal manifestation of the Crohn's.

I also have to go for yet another colonoscopy next week, which is always such a joy. My blood work has been funky lately, even with starting the Humira, and with everything else going on, he wants to do more biopsies.

I'm just cranky. It's not often I ask the question of "Why me?". At this point, the frustration of disease interfering with normal activities has gotten to me. My wine, and more importantly, running have been taking from me.  I was surviving quite well when the pleasure of enjoying food was taken from me, but subtracting running and wine from my life together has made me a bit miserable. I don't even drink much, but it's the proverbial icing on the cake. Since my TBI, normal life functions, have been ripped from me. Memories, cognitive ability, coordination, walking, sleeping, have all been taken away. I have gotten parts of each function back, but having these innate human functions taken away has taken a toll on me. I know that wine, food, and running are all luxuries, but taking away my simplest of pleasures, my releases, my stress relievers, my coping strategies for dealing with the more substantial losses, I am, for lack of a better word, cranky. I'm working on staying optimistic, adding in some walking, and trying to remind myself that it's all for the best for my body.

160.
That is what my scale read this morning.  At 5’7, this weight makes my BMI 25, falling just into the overweight category. At 159 pounds, I will fall into the “healthy” category.
When I tell people I have Crohn’s, one of the most stinging questions/comments has been “I thought people with Crohn’s are skinny, or don’t have issues with weight”.
This may be one of the most common misconceptions about this disease. For many of us with Crohn’s our weights change just as frequently as we move our bowels (couldn’t resist a great poo analogy). Many of us get deathly ill, and struggle to maintain a normal weight. Then we get put on steroids, which cause us to balloon up, gaining more weight than we could ever imagine. It is a miserable, desperate cycle. The rapid weight gains and losses along with the nasty side effects of these medications destroy or bones and our bodies, almost as much as the disease itself.
Throughout high school and undergrad, I maintained at a healthy 138-140 pounds. I was at the peak of my athletic shape, due to a new found love of long distance running, but also ate like a madwoman. Even when I stopped running, my metabolism kept up and had no issues with weight gain. I never experienced the freshman 15, or even the freshman 5, and have fantastic genetics. Fast forward a year later to my initial diagnosis. Within 3 months I had dropped from 140 pounds to 115 (underweight according to Mr. BMI). I was struggling to make it through the day, with no energy, and complete malnutrition. It wasn’t until this point did my doctors take me seriously, and start to question if my initial diagnosis of IBS was correct.  25 pounds… no big deal right?
Within 6 months to a year (I cannot remember the exact timeline at this point), I was started on steroids. They worked fantastically. I soon was regaining weight and could function like a semi normal human being again. Except, I couldn’t stop gaining weight. My weight eventually ballooned up to 188 pounds. Within a year to two year time frame, I had gained 73 pounds. Seventy three pounds.
Along with the weight gain, and side effects of the steroids my joints became brittle, and arthritic. I am so so happy that I had established a fantastic doctor/patient relationship, and took myself off the steroids with my doctor’s approval. I was in a weird place in my life, and was so frustrated with everything that once I safely tapered off my meds, I stopped seeing my physician. Maybe it was part of me not wanting to accept what this disease was doing to my body, maybe it was the frustration of the  nasty side effects of every single medication used to treat Crohn’s, and not wanting to admit it to myself that I needed it. Either way, I parted ways with my physician, and went without seeing a GI doc for close to a year. I slowly lost the first fifteen pounds, in that year, and felt that I felt pretty darn good.
At the end of 2013, my symptoms came back with a vengeance. Knowing what I do now about the disease, I was fortunate to most likely be in remission during the time I was without medical care. Sadly to say that is no longer the case. This time around, with a new doctor, we went over a treatment plan. I adamantly refused to take any form of steroid, which my doctor respected. I had also developed severe inflammation and swelling of my liver, which is typically only worsened by steroids, which made the argument much easier. Pending scopes, I was to start Humira if my disease was active, which of course it was. My weight has been slowly dropping, which I am partly okay with. I also have had to deal with gallbladder issues and surgery, which has definitely wreaked havoc in my body. In six weeks we are going to re-evaluate, and go from there.
 Part of me is a bit hesitant to lose more weight. Though I am not a hundred percent comfortable or confident in my own skin at this time, I feel that by holding onto an extra few pounds I will be safe if and when another flare up comes, or this one worsens. It is such f-ed up logic (excuse my language), but it is the absolute truth. By having more weight to lose, the less likely I will be to become underweight, or as severely malnourished as I was before. This way, I can lose twenty pounds and still be “healthy”.
Ideally, I would love to be 145. I have five weeks before I can resume physical activities and exercising which I am eager to start. I just don’t know where I want to draw the line. I know weight is only a number, and people all over social media are all about “non-scale victories” but much to my chagrin, doctors and health care professionals do not care about “non-scale victories”. They care about numbers, and the antiquated BMI charts. They care about pounds, ounces and kilograms.  It is a battle I will never win, but I will do what makes me feel the best regardless of the numbers.

pockets full of demons.

I've gone a bit stir crazy these past few days, and will be returning to work tomorrow, thank goodness. I am hoping to ease into things, and put in a half day, and see where it takes me.

I'm a terrible patient. Maybe it comes from my years of bed rest and recovery from my brain injury, or my italian stubbornness, but I do horribly when it comes to bed rest. Granted, there are days when I cannot leave bed due to pain, and weakness, but as soon as I can physically start walking, I'm up and moving. I find that the longer I sit, or lay around, the more I start to have issues with my mind. As I have mentioned previously, I have PTSD, OCD, anxiety and depression thrown in for fun. My little demons have played quite nicely the past few years, but love to come out from hiding as soon as I'm home alone, or inside too long. My demons hate distractions. As soon as I start working, moving around physically, just anything to keep busy, they go back into their hidey holes. It is such a childish analogy, but it's the best explanation I have.

I managed to take a half mile walk today, which sent the little demons running. I'm hoping that by slowly easing back into work, even if just for a few hours, they retreat further into their caves. I must promise myself not to over do it though, and will listen to my body (not my little demons). I'll let y'all  know how it goes.

day four

Well it's already been four days since my surgery. I look and feel about seven months pregnant at this point- my stomach/abdomen is so swollen and bruised. I think I went into this being a bit too optimistic. Granted, it could have gone worse, but I didn't fully expect to be this sore, swollen and out of it.

I really don't know how the surgery went or how things looked, because I don't remember talking to my surgeon after it. My mom briefly spoke to her, but also doesn't remember, so I have to just wait and see what she has to say at my follow up appointment. I do know that I have two extra incisions (most laparoscopic gallbladder surgery involves 4 incisions, and I have six).

I am also quite anxious to hear the results of my liver biopsies, but again I just have to be patient and wait. In the meantime, I will nap.

Work/Life/Crohn's Balance

I love my job. I have found not only work that I am passionate about, but an amazing group of coworkers. I have found a job that is flexible, understanding and accepting.

In previous workplaces, I've had issues with missing time due to illness, countless doctor's visits and well inability to work. In the US, our sick time/leave system (for the most part), blows. Unless you are severely incapacitated or permanently disabled, there are few safety mechanisms, and legal safeguards for those with temporary illnesses, injuries or disabilities that are not lifestanding. After trials and tribulations of the legal system with my traumatic brain injury, I learned that in the US, there is often this grey abyss between becoming dependent on lifelong SSI benefits, and being a healthy fully functional employee. For those illnesses which are "invisible" this grey abyss turns into fifty shades of grey abyss, mountains and plateaus.

Crohn's Disease, and UC are not straight forward in any logical manner. Every single person is affected differently, in terms of ability, capability and "dis"ability. Just in the year of being diagnosed with Crohn's, I have developed gallbladder and liver disease. Does every indivual with Crohn's  develop these issues? Absolutely not. While there are more common complications, Crohn's, as well as UC are both far from being understood from a biologic sense. With Crohn's, there are some general complications, but so little is unterstood to make vast generalizations when it comes to long term, typical sequelae.

Still with me? At this point, complicated should be my middle name...

I'll use myself as a perfect example. I'm 25, single and female. I have a history of a traumatic brain injury, and do qualify for reasonable workplace accommodations (as I did through out school), such as fancy computer screens due to my vision issues, extended time for testing, ergonomic chairs, and adaptive equipment for my neuromuscular issues (at this time, in my current job, I have taken advantage of none of the above). I developed Crohn's a few years ago. Crohn's, like traumatic brain injuries, is too protected by the ADA act, for it is a physical impairment of the digestive system, and can impair one or more major life activities. That's fannnnntastic. But what does it mean in terms of reasonable accomendations? Close access to a restroom? The possibility to telecommute?

Keep in mind that ADA is only valid in those workplaces with 15 or greater employees.

I work for the state government, which has thousands of employees, and am also supported by a vocal union. Two years ago, in order to support myself, I found work waitressing at a small family owned restaurant. My employer did not provide sick time. My employer did not provide health benefits, and how on earth how was I to telecommute to waitressing, at a workplace not required to comply with the ADA. At the time, I was searching for other jobs, but was struggling due to the economy, my limited job skills, and unfinished degree. Was I able to work most days? Absolutely. Those days that I did miss to illness though, were uncompensated and I was lectured numerous times of missing too much work.

This is real life. I'm extremely grateful I am at a job, with unlimited sick days, 22 paid medical leave days, and 22 paid vacation days per year. This is a miracle in itself. For the other 1.4 million Americans living with Crohn's disease, this is not a reality. For a time I toyed with the idea of looking into SSI. I could not support myself with work, yet as many of those with Crohn's, knew I could work given the right accommodations and support. Unfortunately, I am an oddity. I have found a loving, nurturing workplace that will help, but my heart breaks for those who struggle daily with providing for themselves, and their families. The "system" is so disheartening.

Slice and Dice

Finally have a date for surgery.. It looks like I will be cut open April 16th (11 days). I do have to go for more pre-op testing, including bloodwork, X-rays and an ultrasound, so the date may change. One of the biggest issues thus far is that my GI, whom I love, is located about an hour and forty five minutes away (close to my parents house). My sister(who has GI issues) also seems the same doc which is one of the reasons I have yet to change. Also, my doc has a major Crohn's and Colitis research center attached to his practice, which is the most important reason why I have not left his practice yet. With Crohn's, it is so incredibly important to have a physician whom is interested in research, and that stays up to date. Considering I have only had the disease for about two years, and am on the last medicinal treatment option available, I need someone who is involved with clinical trials and new procedures.

This is going to be my first major surgery, associated with Crohn's. There is a lovely "fact" or statement from the CCFA that states that up to 75% of those with Crohn's will require surgery. Though this exact surgery is not on my bowels/intestines, I would not be needing this surgery if I didn't have Crohn's.

I will be saying goodbye to my gallbladder and some of my liver.. Typically this is all done laparoscopically but my surgeon feels that she will most likely do it through an open surgery due to an increased risk of bowel perforation.

So in a lovely turn of events in the past two weeks, I am now prepping for an upcoming surgery. My gallbladder, thanks to chronic inflammation, is no longer functioning and must come out. I ended up in the emergency room 2 weeks ago, with a slightly abnormal ultrasound. I was then discharged and released and told to follow up with a HIDA scan to see how well my gallbladder was functioning. Lucky for me, I had no stones, but after the HIDA scan found out that my ejection fraction was under 10%. My doctor prefers surgery for anyone with a scan under 38% so... Yeah I definitely make the cut for that one.


I'm meeting with a surgeon tomorrow. One of the things my GI doc is concerned about is taking multiple liver biopsies as well as doing a biopsy of the tumor on my liver while in there. He also gave me a fair warning that I may be forced to do an open surgery rather then laparoscopically due to severity of my Crohn's and the close proximity of the diseased intestine to the gallbladder, which increases the risk of complications.

Fingers crossed tomorrow will go well, and it can get in quickly for surgery. I'm at my wits end and can't deal with the lack of sleep much longer.

march

March is always a special month to me. March is Brain Injury Awareness Month. This past December, I celebrated the ten year anniversary of my TBI. Why would I celebrate that type of event?! To me, it is like celebrating a birth date. Most people are only lucky enough to have one birthday, a brand new beginning. In my case, I had a second beginning at life. I know I'm taking an extremely terrible event and just molding it into something semi-positive, but that is how I have been able to cope with it.

I've gotten to the point, where the only times I mention my TBI, is if I'm having an off day, or have medical visits related to it. I feel that without experiencing a brain injury, I would not be able to cope so well with my Crohn's. I have been living with an un-curable, "silent" illness for so long before my Crohn's diagnosis that once it was added into the mix, nothing substantially changed. Maybe that is why I have so much acceptance to my diagnosis. I have learned that asking "Why me?" is not going to change the illness, or the diagnosis.

It is also difficult to be active in both causes. Working in public health, I have a passion for advocacy. Crohn's is supported by the wonderful Crohn's and Colitis Foundation of America. Traumatic Brain Injuries are supported by both the Brain Injury Alliance of NJ (where I reside) and the Brain Injury Association of America. I feel pulled to be apart of both, yet time-wise it has been difficult. I am going to try the best I can to advocate, to raise awareness, to fundraise, and to speak of both. I can't, and won't choose between the two illnesses, since they both play equally important roles in my life.

Round Two

Took the second part of my loading dose of Humira, this past weekend, a couple of days early. I was at my mom's for an overnight visit, and wanted to inject with someone at home, in case I screwed up. I know this means I also majorly screwed up my schedule, but also wanted to change my injection day. The first injection was done on a Wednesday. The next two days at work (Thurs. and Fri.) I felt like death, and so run down. This time, I injected on Saturday, and felt like death Sunday and Monday. I'm hoping to adjust to Fridays, so I have the weekend to recoup. It's a tough decision... Do I really want to waste my weekend feeling like crap, or do I want to barely be able to function two days at work?

So far in two and a half weeks, I've lost ten pounds. Humira has yet to catch up with this flare. As my lovely GI once stated, I rather you live consistently a little chubby, so that during flares, you don't get deathly ill. I've been thankfully? Holding onto an extra 20 pounds from prednisone/Entocort, so I have something to lose.

The irony of the disease is never lost on me. The disease eats away at your core, your body literally fighting to survive. Then the steroids, which help your body, go above and beyond their duty and produce side effects that are worse then disease. Damned if you do, damned if you don't.

Coworkers, friends and family constantly complimenting on how great you look, how much weight you lost, yet you barely have enough energy to stand up. "Wouldn't it be nice to lose weight that fast" or "I wish I had Crohn's to lose weight". WTF.

I will fight this. I will try harder, not to let this disease consume me, neither my body nor brain.

day 6

Day six, after first loading dose of Humira. In the past week, I've lost five pounds, and am in one of the two worst flares of this illness so far. I'm hoping that I can survive until day 15, and get two more injections in me, before this has a chance to destroy my body any further.

Besides the typical GI symptoms of a flare up, my arthritis also typically becomes much more severe.  This time around my hands and hips are most affected. Previously, my hips, ankles and knees were my hot spots. My hands and fingers bothered me last time, but not to this extent. I'm thinking it's just due to the fact that I sit at a computer 7 hours a day, with desk work.

I also am staying vigilant about my weight. Previous to my diagnosis, from 17 through college, I maintained 140 lbs, without any awareness. I could eat, drink, exercise and maintain without any thought. During my first severe flare, I dropped to 117 in under two months. Being close to 5'8, I was so sickly. I was out on Pentasa, then Asacol HD, then Lialda with no help. I then added in Entocort, with a course of Prednisone, and my weight skyrocketed to 187. I started to experience drastic side effects, and tapered my way off. At the time, I was also extremely frustrated with my physician for he didn't agree with my decision to stop steroids. Within three months, I dropped 16 pounds. It's been over a year, and I maintained at 167-168, medication free. I was in the school of thought that hey, I could work out more and watch what I ate to try to lose, but maybe hold off on it. I was honestly afraid of choosing to lose weight. Knowing what my body was capable on on its own, I didn't mind hanging on to those extra 25 lbs as a buffer space.

Here I am, closing in on 162. I'm not paranoid at this point, but will be monitoring it. It's abnormal for me to drop five pounds so quick. I'm hoping that soon enough, Humira will catch up to my disease. Would I love to be 140 again? Absolutely but not in this fashion. My body can't take it, and is struggling to survive as it is.

Humira, Day 2

So besides a minor snafu with FedEx, overall my Humira loading dose experience went very well. Humira comes as an auto-injectable pen, and less commonly in the US, syringes. For Crohn's and Ulcerative Colitis, the first loading dose of Humira on day one, are four doses (4 pens), followed by another 2 pens on day 15. These six first doses come in a cute little starter kit, along with a practice pen that talks. For other conditions such as RA, the loading dose is slightly different, requiring less of a start up dose. My doctor required an appointment with his NP to educate me on how to inject. Some physicians do traveling nurses, some do nothing.

Another thing that is important to remember is that it must be refrigerated. This is the major issue of shipping/receiving the drug. Did I mention it's ridiculous cost (my 6 dose starter pack cost my insurance $7,866.19)? Yes, seven thousand, eight hundred sixty six dollars and nineteen cents. So typically your prescription drug insurance coordinates with a speciality pharmacy to acquire and distribute the drug once the insurance approves it (which due to cost can be a major process). I am blessed to have fantastic insurance, where from submittal of pre-approval forms from my doctors office to having product in hand was less then a week. The speciality pharmacy gets the go ahead, and schedules with you how to ship/send the product. It must be overnighted due to being refrigerated. Also, I had to coordinate with my doctors office to have an appointment with the NP on the same day to administer.

After the second loading dose, I will take one dose every other week. I will then follow up with my doc in six weeks, to either continue with every other week or to go to weekly injections. My inflammation is severe enough that my doctor wants to do weekly injections, but due to my severe liver issues we are unsure if my liver can handle it at this time. We also have to keep an eye on the tumor on my liver as well, since Humira tends to enlarge tumors.

I'm sore, swollen, and feel like I was hit by a bus. Being in the middle of a flare sure does not help, but I haven't felt this sick in over two years. Hopefully in a couple days I will be feeling better.

I'm willing to do anything at this point to control this illness. I had a mini break down yesterday driving to my doctors. I'm 25. I have survived a moderate traumatic brain injury. I now, completely unrelated have a disease that is eating away at my intestines, causing severe inflammation everywhere. My joints are so arthritic. I now also have chronic liver disease, and a failing liver. I see my friends, peers, sorority sisters, classmates getting married, having kids, buying houses. On the other hand, my life consists of doctors appointments, sleeping, struggling to make it through work and trying just to survive. The past ten years of my life since my TBI, I have felt like a lab rat, running and running in circles but never getting anywhere.

Humira

I'm anxiously awaiting my loading dose of Humira tomorrow, pending all goes well with the FedEx fairy. I'm so blessed and thankful for excellent insurance. Within a couple hours of paperwork being submitted, I was approved. Now it's just coordinating the delivery and the appointment with a nurse practitioner...

What's in a name

I've been contemplating changing the name of my blog for the past few weeks. Part of me believes it is a bit too "ironic", and a lot too cliche. For now it's staying. It fits so perfectly. With both Crohn's disease, and with Traumatic Brain injuries, uncertainty are the only constants. There is a popular phrase amongst docs that no two brain injuries are a like. Just like with Crohn's, there is no perfect etiology, no predictably. In both illnesses, doctors have only breached the surface of understanding how the body heals, reacts, injures. I've spent a great deal of time being frustrated. Frustrated because there is not a natural course of progression. Frustrated because there are very few answers. I worry about what the future holds... will I eventually progress to having fistulas/abscesses? Will I eventually suffer from early dementia? How will my body handle pregnancy and child birth, for it is under enough stress just surviving day to day.

It is very true that everyone's lives are unpredictable, uncertain to an extent. Being majorly type-A, I find myself clawing to predictability, to planning ahead. Many diseases and illnesses are understood, researched and much more predictable. With having the combination of two very serious health issues, I feel that no matter how hard I try to plan,  my body revolts. Everyday life brings a new challenge, a new WTF moment. Sure this is consistent amongst healthy and not so healthy individuals, but the magnitude is so different. While "healthy" friends and co-workers may come down with a cold or the flu, I end up having a cold, and finding out incidentally that my liver is now functioning. Last fall, I had a sports related injury, and while getting a physical therapy evaluation, I find out that on top of the injury, I am starting to have neuromuscular contracture issues, and nerve death in my legs due to my brain injury.

I have tried stopping my search for certainty and predictability. I barely have enough time to try and control those times, and the fallout of my body being so complicated. Instead I have been trying to focus on the baby steps of life, and what I can control.