What is Wellness?

I was asked by a coworker who is doing a project on ”What it means to be well with a chronic illness?’ if I would describe to her what that means in my particular chronic illness journey. This is something that I love talking about, as my ‘well’ probably isn’t congruent with your own, unless you are a Spoonie yourself. The definition of well, accordingly to Merriam-Webster, is being ‘free or recovered from infirmity or disease.’ So I think it is safe to say that by definition at least, we that have chronic illnesses are never truly ‘well’ because our maladies are, well, in fact, chronic. But I digress to a less philosophical level.

What does it mean for me to be well? I’ve been thinking about this question and how I would answer it since my coworker asked me to help her. So, I’ve decided that I am not going to sugarcoat or try to make others feel comfortable, but give a real glimpse into what it is like living with Crohn’s Disease and Sjogren’s, both of which are in remission.

I have been lucky the past few years to have no major occurrences or flares due to my Crohn’s, which is the problem child of my collection of autoimmune diseases. So, for doctors, friends and family, I am classified as being well, and for the most part I agree. What most do not realize is that just because one is free from disease activity does not mean they are free from symptoms and difficult days. There are so many levels to being well and it surely isn’t strictly based on disease activity.

I’ve had three Crohn’s-related surgeries, one being after a bowel perforation. This surgery especially was extensive and in the four years since its happened, I haven’t had anything but urgent, liquid bowel movements. Sometimes over 10 a day. This isn’t due to disease activity, but rather is just a precipitate of multiple bowel resections. I’ve tried medications to help with this, but they all make me very nauseous so I opt to deal with the diarrhea. Many would be calling off work or school, but to me, this is my normal, this is my ‘well.’

Due to these surgeries I have also developed extensive scar tissue. Recently this has become an issue, with bowel obstructions happening more often, pulling/tearing pain when I laugh, sneeze, cough, lift a patient at work, etc. This pain has become a daily occurrence, but I honestly still consider myself well compared to how sick I’ve been in the past. Although this is arising after many years of having no obstructive symptoms, this is my normal, this is my ‘well.’

Medications can also be a double edged sword; they’re keeping us healthy and disease free but cause side effects that would keep many unaccustomed in bed. I take one chemotherapeutic medication (of which the dust particulates can kill an infant; just…fun fact!) and one biologic medication specifically for my Crohn’s. The chemo causes more side effects (at least that I can feel) than the biologic; my hair falls out constantly, my skin is sensitive, nausea, etc. My meds also cause a pretty steady UTI that I cannot treat unless it gets bad because of my history of c Diff. But even with all the side effects stacked up against me, I still am better than I have been with active disease. This is my normal, this is my ‘well.’

My ‘well’ is a week where I only have to sleep all day once and have minimal medication side effects, but the reality is is that those things never fully disappear, my ‘well’ is never going to align with your ‘well.’ A easy day in my life may seem like a marathon to some, but that’s because as chronic illness sufferers, we often have to adjust our measurements of what being ‘well’ really means. We get used to abnormal things about which others would call off work and school. Right now I’m at a point where I cannot laugh without feeling my bowels being pinched by adhesions, but I also don’t have active inflammation. This is maybe not others’ definition of well, but I’ll take whatever I can get. After being so sick for so long, one’s scale of being well gets skewed, one starts to get used to and be accepting of what others without chronic illness would consider sub-par.  There isn’t a day that goes by without me having a symptom, but this is my normal, this is my ‘well,’ and I’m so thankful for it.


A year later.

It’s been a while. A long while. Let me catch you up. Let’s rewind to a little over a year ago…

I had been having increasing issues at the turn of the new year. Constant partial small bowel obstructions, loss of appetite, fevers, inability to eat. Everything was going horribly wrong. But I acted like nothing was wrong. Let myself get to a place that I never want to go back to. On Easter Sunday of last year, as soon as dinner was finished, I knew something wasn’t right. Something was very, very wrong. I went back to my apartment and studied for my final the following day the rest of the night. But as the night went on, and morning grew closer, I knew I was in trouble. I remember texting my friend Janine, a fellow IBDer, and alerting her that I may need her to take me to the ER should my pain become unbearable during the night. I was okay, however. I even managed to sleep a few hours. When I woke up, my pain was worse and I couldn’t even put the tiniest bit of pressure on my right lower quadrant without the pain becoming exponentially worse. But being my stubborn self, I decided to wait it out until noon. For some reason doing this ‘deadline’ type of thing makes me feel less guilty about going to the ER. By 11am, my pain had gotten so much worse than it was when I woke up and I could barely walk. I knew if I went I wasn’t going to leave, so I got a shower, shaved, packed some essentials in a draw-string bag and off to the bus stop I went. Yes, I rode the bus. Shhhh.

I got triaged right away. Waited hours for results from various scans. The doctor could barely touch my abdomen it was so tender. I usually refuse pain meds, but this was a day where they were given without even asking. Was so thankful for at least some pain relief. When the doctor finally came with the results, I could tell by his face that something was wrong. He said he was calling my surgeon. That there was a tear in my bowel. At this point, I didn’t know how severe, or what my options would be, but I know enough about medicine to know that even small tears can make a person septic and cause them to need emergency, life-threatening surgery. As I sat there all alone, for a while I wondered if I would see my family again, if I would ever be outside of that hospital alive again, if I would get to live past that day. I didn’t know. And I was so scared of that unknown.

It ended up that with strict bowel rest and heavy antibiotic treatment, I was able to escape emergency surgery. I did however, undergo a bowel resection one week after being admitted to the hospital. At that time, I was healthy enough to undergo the surgery and being fed through a picc line, which would continue for a week following surgery as well. The surgery removed two feet of my small bowel and a portion of my colon, leaving behind only healthy, Crohn’s Disease-free intestine. My recovery was tough. The first three days I don’t really remember. Luckily I had a private room and was able to hide away and heal without being bothered. Five days after surgery, after fifteen days in the hospital, I was discharged. It felt so good to be outside, to be alive, to be ‘free.’

Since then, it hasn’t been easy. I had c. Diff. for nine months following my hospitalization, forcing me to basically take a full year off from school. And because I was using the restroom an upwards of 25+ times a day, it was also impossible for me to work. For a long while, and honestly, up until a few months ago, I truly felt worthless. I never thought about taking my life or hurting myself in any way, but I did wonder why I was here if this was the life I was going to continue living. It’s difficult being a young person that can’t do young people things. Can’t go to school, can’t have a job, can’t go out to eat with friends…the list goes on and on. I’ve slowly gotten to a point with my health that I deem acceptable and that in turn has brought me back to a place of confidence in who am I.

I’ve learned a lot over this past year, and even though its been a rough one, I’ve had a lot of great things happen as well. And things are getting back to ‘normal’ slowly but surely. I learned that I should always trust my gut, literally. Sometimes that day flashes back into my mind and I think, ‘What if I would have eaten one more thing? I could have been dead.’ I learned to love life more than I already do and to purge anything or anyone that doesn’t make me happy. Things are looking up! I found the love of my life (Fun Fact: He actually kissed me for the first time only a few days after being discharged from the hospital. I was still on a liquid diet. Super romantic ya’ll); he has been my anchor through the struggles I’ve faced in the past year. So thankful for him and so excited to see where the next year takes us. I’m starting my first ‘first author’ project with my PI on suicidality in IBD patients. I’m FINALLY returning to the work force. I’m organizing a college-aged support group for IBD patients. Lots of new beginnings. Couldn’t be more thankful for what my experience and the past year has taught me. And most importantly, I’M IN REMISSION. Very excited to see what the next  (healthy!!) year holds!!


Just Another Adventure…

So today someone asked me, ‘What’s it really like to live with that?’ And by ‘that’ they meant Crohn’s Disease. In almost two years with this diagnosis, no one has ever explicitly asked that question(ones like it of course, but never so “to the point”), so I was sort of thrown for a loop as to how to answer. As such, I replied like I usually do to questions of the same nature with a simple, ‘…it sucks.’ That’s quite often a phrase that will inhibit any further prying by the interested party. Most people aren’t really interested in the fine details of what its like to live with Crohn’s, so a simple phrase such as the aforementioned will satiate their inquiring minds.

Later today I reflected on the exchange, and all the hundreds of exchanges similar to it over the past two years. I then thought, “Wow, why SHOULDN’T they know what its really like?” Of course one can read online about symptoms and surgeries classic to IBD, but a bulleted symptom list doesn’t even begin to scratch the surface of what its really like to live with CD on a daily basis. If you are a person with IBD you know this to be true. You also know that no one we encounter can truly understand what its like to live with IBD unless he or she is a patient themselves. However, I think we (I know I’m not the only one who 9x/10 gives a response as I did today) can do a better job of giving friends, family, coworkers, and interested strangers a glimpse into our everyday lives. We don’t want to overshare of course, but I feel often times we excessively sugarcoat. This doesn’t serve well to the whole ‘spreading awareness’ thing.

A phrase that I use very often with my docs when they shake their heads in disbelief at my ever-changing condition is, “Everyday is a new adventure.” So, what better way to explain what its really like than to give a play-by-play of an ordinary but very adventurous day earlier this week? I’m starting with the night before.

Well, okay, its 10PM and I forgot to finish my online physics homework because I was too busy organizing my medicine drawer (yes, I have a medicine DRAWER). Its so organized now. Knowing where everything is at and having my pill organizers freshly stocked is so gratifying. I’m reminded that “its the little things in life.” I found four lonely Zofran and one Vicodin at the bottom just chilling. Not sure how long they’ve been there, but they’re getting thrown out. Now to finish that physics homework. Got a 10/10. By the time I’m finished its midnight and I still have a few things on my list for the day. Lord knows I’m not going to sleep anytime soon. I’ve been a chronic insomniac ever since I was on Prednisone two years ago when I first got sick. I just can’t shake the habit. I check off a few more ‘to-dos’ before going on a run at about 1AM. Running hurts my body, but its an escape. Especially at night. I am completely alone with my thoughts. No one is outside. Fifth Avenue is deserted. Perfection! I hit play on my iPod and away I go…

Upon returning home I am reminded that I haven’t washed my hair in four days. I’m also sweaty and gross. I need a shower. I have been trying not to wash it as much because then it doesn’t fall out. I have a lot of hair to spare though, so to most its not noticeable. Nah. I’ll just rinse off and get another shower in the morning. After my rinse, its THAT time-pajama time (its also a little past 3AM). Hallelujah. Today was a long day-was on campus from 8AM to 8:30PM. Time to sleep, or at least try to. I think I finally fell asleep around 5AM, at least that’s the last time I checked the clock on my phone.

Wow. That was scary. I’ve been having medical/surgery dreams lately, most likely due to the fact that I have a major surgery creeping up on me. This was probably the worst so far. Honestly though I don’t have conscious negative thoughts about the surgery or its outcome. I have one of the best surgeons at UPMC. Even still, I thought about it for a while before I went back to sleep for a little bit. I had to be up for a 9AM class. Before I showered I had all good intentions of doing my hair nicely. But my arms are tired and achy from washing my hair so I decide just to blow-dry it for a few minutes-enough that it won’t freeze when I go outside but not enough to completely tire me out. I used to not go out of the house without my hair straightened. That’s not one of my main priorities these days, so my natural waves will have to suffice. I’m sitting through my class trying to stay awake. I’m like a bobble-head; almost falling asleep every few seconds. I’m tired yes, but even when I am exhausted I don’t usually have to struggle to stay awake. If you’ve ever seen the movie Madeline, I’m having a moment similar to when Miss Clavel is spontaneously awoken from sleep and states, “Something is not right.” She was right. Madeline was suffering from acute appendicitis. I am also right in having that thought. I haven’t had my morning coffee. How I could miss such a crucial step to my morning routine is beyond me, but I’ll take a wild guess and blame it on sleep deprivation. Lets take a moment and thank God for Starbucks. I bought my coffee. A caramel macchiato, triple-shotted. For the un-caffeinated population, this means that I added two shots of espresso to the one that was already in the classic drink. Needless to say, after the caffeine started to work its magic, I was feeling much less sleepy. On my walk over to the VIP Center I, for a moment, contemplated whether this was a bad decision or not as I had to travel to Children’s Hospital. We all know coffee works wonders as a bowel stimulant, however that’s not an effect that I need. My bowels do that all on their own. Coffee sometimes makes things worse, but sometimes not. Would I have to go to the bathroom while on the shuttle? Dang. I don’t have my emergency kit with me. Oh well. Shit happens. Literally. But it washes. I go back to periodically sipping on that liquid heaven. Seriously. I love coffee.

(This is supposed to a strict play-by-play, but my next venture needs some context. I recently joined the research team of a renowned psychiatrist that specializes in IBD and other GI diseases here at the UPMC IBD Center. So exciting. Wonderful opportunity. Couldn’t be more ecstatic. And grateful. She works with both children and adult patients, so that is why I am at CHP today.) So, today is a research day. I meet with the doctor’s research assistant at the VIP Center and then we head over to Children’s Hospital of Pittsburgh. On the shuttle over, we talk about the Super Bowl and all the wonderful food that that day brings. I think of how much I would love to have buffalo chicken dip. And for the rest of the bus ride, I’m trying to rationalize going to the store later and getting the ingredients so I can make some and eat it in the comfort of my own home, with my own bathroom nearby. Would be a deliciously horrible situation though, so I’ll pass.

As I’m entering data and symptoms into the database, I see so many parallels. I know what they are feeling and what their lives are like, and its a bittersweet thought. I wish I could take IBD away from every one of these kids. When I think about them suffering with this disease all I can do is shed a tear. But I know that IBD will make them strong and give their lives so much depth. They will be extraordinary. Let’s face it. Living with IBD? They’re already extraordinary. I was feeling okay in regards to my intestines this morning. Having really no discomfort at all. Then all of a sudden its there. Like a knife stabbing me. I sort of yelp and the psychologist that is working at her desk not far away asks, ‘Is everything okay?’ I can’t really respond adequately as I am in so much pain its difficult to form words. She walks over from her desk and comments on how red my face is. She’s right. I can feel it. My face is so hot and I feel beads of sweat begin to form. This pain is BAD. For about thirty seconds I’m just focusing on my breathing and I try to not make a scene. These people are used to IBD patients. Their level of understanding is at a higher level than that of the general public, and that is incredibly comforting. My pain is beginning to subside. I know what that was. It was something passing through my fistula. Glad its over. This could prove to be an interesting day.

For lunch, regretfully, I decide to get stuffed shells. I love pasta. The sandwich I wanted had seeds in the bread and I can’t chance that with my fistula. As I shovel the shells into my mouth, I make a mental note to take an omeprazole before bed to stop any reflux this sauce may induce. These are delicious. Utterly DELICIOUS. The feta, mozzarella…so yummy. I haven’t ate like this in a while so the last few days of cafeteria food have really been such a treat. You have to pay to gamble, however.

The research assistant, the psychologist and I are eating lunch together. Not too long after I am finished eating I start feeling dizzy. Then the nausea hits. I am a person who loves to be part of conversation. I’m a talker. But when these symptoms start to intensify, I stop participating in the conversation and pick a spot on the filing cabinet opposite me to stare at. This nausea is extremely severe. I will vomit today at some point. My hands start to feel tingly and cold. Then my whole body turns to ice and my vision becomes blurry. That’s something new. As I said above, every day is a new adventure. I thought for a moment I would faint. I have never felt quite like this before. I close my eyes and focus on breathing and avoiding the message my brain is sending to my gastric muscles-to evacuate my lunch. I sit at my desk for 15-20 minutes just trying to feel okay to stand. I don’t want to faint here. That would be embarrassing. I eventually am able to stand without feely dizzy, but the nausea is still there. I quietly make my way to the bathroom as I know what is about to happen. I vomit. Gargle with water. Repeat. I feel a bit better. Less nauseous. I eat some of my pumpkin cake that I had for breakfast to get the taste of vomit out of my mouth. Make another mental note to add a toothbrush/paste to my emergency kit. I don’t think my coworkers know this just happened. This is good. I don’t like being made a fuss over and that may happen if they find out I got sick.

I feel much better by the time I leave the hospital to go home, however I’m very fatigued. Lack of sleep combined with today’s ordeal created a giant urge to curl up under the warm covers of my bed and fall peacefully to sleep. Usually this is where a ‘plot twist’ would occur, but that’s exactly what happened when I got back to my apartment. I was supposed to go grocery shopping and do laundry, but I just can’t. I slept from about 6:30PM to 11:30PM. When I wake up, I know I need to eat something, but I’m not hungry. I decide to have some ginger snaps and two dum dum lollipops. If you know me, you know I love dum dums. They also really help to curb nausea. I’m up for a while. In the wee hours of the morning, I start searching online for the Altoona “Take Steps” web page as I am curious to know if the walk manager has picked a date yet for this year’s event. I’m on the walk planning committee so I think I would be aware of the date if it is picked, but I search anyway. There’s no page for the event as of yet, but I stumble across the blog belonging to the mother of a young girl who melted my heart at last year’s Altoona “Take Steps.” (I was the honored hero at the walk and spoke about my IBD story. The girl told her mom that she wanted to come and say hello to me because she was happy to see that there was someone going through what she was. I had to fight so hard not to burst into tears right then and there, however I cried the whole drive home. I was so honored. Its a moment I will never forget.) She is so young. It breaks my heart and brings me to tears to read what she has been going through recently with her IBD. So brave. We have to be. As I read one particular post, I realize that I was not led to this blog by accident. The mom writes that the girl claims Jeremiah 29:11 as ‘her verse.’ Once again I am reduced to tears as this is also ‘my verse.’ The verse states, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” These are the words I remember when I reach a breaking point. It doesn’t happen often(maybe 2-3 times per year), but it does happen. It has to happen in order to cope effectively with this disease. You have a ‘momentarily lapse’ as I call it, and you pick yourself back up and move on. Letting emotions flow is a good thing. I ask myself why I didn’t think of ‘my verse’ today during my ‘episode’ after lunch. I realize that even though that part of the day was fairly horrible, it didn’t even come close to breaking my resolve. This makes me laugh. And is also amazing, at least I think so. I’m proud of myself. I fall asleep, only to wake up and start a whole new adventure tomorrow.

If you read that whole thing, congratulations. I thank you for taking the time out of YOUR busy day to read about MY busy day. If you are an IBD patient, I hope I have inspired you to write a piece similar to this, even on a much smaller scale. Let’s get out of the habit of using the ‘easy responses’ to inquiries about our disease and give those around us more information about ourselves. With knowledge (usually) comes increased understanding. If you are someone without IBD, I hope this post has provided you with a better understanding of what its like to live with IBD. Not every day is like this. There are always good and bad days. Described was an ‘IBD day’ if there ever was one. 🙂 Again, thanks for reading. I will leave you with my favorite quote. Hope you all have a wonderful week.

“Search for the seed of good in every adversity. Master that principle and you will own a precious shield that will guard you well through all the darkest valleys you must traverse. Stars may be seen from the bottom of a deep well, when they cannot be discerned from the mountaintop. So you will learn things in adversity that you would never have discovered without trouble. There is always a seed of good. Find it and prosper.” -Og Mandino

School…AND IBD

So…school and IBD. Where do I even begin?

I was diagnosed with Crohn’s Disease in the second semester of my freshman year of college, just last year. I had GI troubles for a few years prior, but all of a sudden I was sick…really sick. At the time of diagnosis and throughout the rest of the semester I was still attending school, much to my docs’ amazement. Of course I missed days or even whole weeks of some classes, but I kept up. I should have been in the hospital, but anyone that knows me realizes that I am beyond stubborn and would not let ‘some disease’ ruin my academics.

Another thing you should know about me is that I am a pure-bred academic. Learning is one of passions. Really. You can say it…’What a nerd…’ I embrace the term with every ounce of my being because yes, I am indeed a nerd and proud of it. When I was diagnosed, I really didn’t think of taking a break from school or anything of the sort, but subconsciously I equated the thought of doing so with failure. I now know that’s not even close to the truth; I withdrew from a class this semester partly because of my health. That was difficult for me. Like I said, I am stubborn. Baby steps are progress still.

Almost two years post-diagnosis I can say that even though I am slow to give myself leeway when it comes to school, I have learned many lessons and realized things that every student with IBD NEEDS TO KNOW. My points are obviously going to be geared towards college students, but can definitely be amended and/or adapted slightly for high-schoolers. For the essence of character count, I will keep this to five ‘tips’ which I find most important:

1)Register yourself with disability center/services at your school.

This is the college version of 504 plan, with a few changes. You outline the accommodations that you think you may need should a flare happen and then the state decides whether these accommodations are appropriate given your current health status. Most schools want a new form at the start of every year. Don’t say to yourself, ‘I won’t need it.’ You may not, but if you would have an unforeseen health issue and you’re not registered, your professors have no legal obligation to accommodate you in any way. That is setting yourself up for failure. Basically this is your lifeline should anything happen; be it a flare, hospitalization, etc. We hope it doesn’t happen but please, be better safe than sorry. Also important to know, and a good Segway to my next point, only disclose what you feel comfortable disclosing to each professor. They are not entitled to any information about your health-all you HAVE to tell them is that you are registered with the disability center and request X, Y, Z accommodations. The decision to give your professors more info is totally up to you and is usually dependent on how well you ‘click’ with a professor.

2) Don’t constantly drown your new friends with facts about life with IBD (unless they ask).

For full disclosure, I am not advising you to keep your disease a secret and stop spreading awareness. I advocate for the exact opposite. BUT, young people (your peers) do not understand and cannot understand what living with IBD is like unless they have it themselves, which we all know. That’s why we have to ‘lay it on them slowly,’ if you will. Don’t give them your whole IBD war story in one sitting (again, unless they explicitly ask). Let them digest tiny facts here and there, all the while building a relationship so that when you do disclose your IBD story(and I do expect you to do so with good friends), it will mean so much more to them, and you.

3) ‘Shop’ for a GI that is local to your school BEFORE you begin school.

Personally, I am lucky with respect to this ‘tip.’ I live not far away from Oakland (the home of PITT) so I did not have to change GIs. University of Pittsburgh Medical Center is on campus and where my GI practices, so moving to school was actually an upgrade. I can walk to the hospital. For those of you who are going to be moving away for school or who are already going to school away from home, I suggest looking for a local GI. If something happens while at school, you need a doctor THERE who is familiar with your case. If you go to an institution with an on-campus medical center, then this is easy to do. If not, you can find docs on CCFA.org, google search, Angie’s List, etc. Involve your current GI in this process-they will have to communicate with them successfully should something happen.

4) Don’t go crazy with ‘college food.’

Okay, so most of our GIs will tell us that food, what we eat, doesn’t matter. I think most of us can attest to the exact opposite, that our diet is indeed important. As we journey through life with Crohn’s Disease or ulcerative colitis, each of us compiles a list of ‘no-no’ foods. DO NOT completely abandon that when you start college. Your success in school is heavily dependent on your health. Before you arrive on campus, search on the school’s website for local restaurants and cafes. Make a list of places that seem like they match your diet, then search and print their menus. If you are living in a dorm or apartment with a kitchen, then this puts you in even better position to keep within your dietary boundaries. There are tons of great cook books for IBD. Pinterest is also a great place to find fun, easy, and healthy recipes for every type of diet. I’m not suggesting that you NEVER eat pizza or burgers, but don’t make unhealthy foods such as those your staples. Believe me, your intestines will thank you.

5) Understand that school is not a race.

So, probably the most important point in this post with respect to all aspects of our health; physically, mentally, emotionally. This is also something that took me a while to realize. As I stated above, I am stubborn. I am a person who wanted to graduate from undergrad in three years and go to med school when I was twenty-one years old. Obviously not going to happen. It took me a while to realize this, and I think its something that a lot of students with IBD have trouble with; we think if we have to take a semester (or years) off or withdraw from a class or two that we are never going to get where we want to be professionally, prompting some to change majors or even quit school. I’m here to tell you, assure you, that school is indeed NOT A RACE. If it takes you six or seven years to finish school instead of the standard four, that is perfectly okay. You still are going to finish school. If you take a semester or a few off I assure you that school will be waiting for you when you’re ready to return.

After all of that, I’d like to give you a little background about myself and my history with Crohn’s (and school). My name is Laci Altman, and I am a junior biology major at the University of Pittsburgh. Hail to PITT!! My plan is to attend medical school and become a GI sub-specializing in IBD. I am involved with CCFA on a number of levels, the Crohn’s Disease Warrior Patrol, and programs specific to the UPMC IBD Center. I was diagnosed with Crohn’s Disease in February of 2012 and have been on multiple biologics, immunomodulators, and other meds, had two surgeries since then, and have been working in unison with my doctors in hopes of reaching a complete and long-lasting remission. School hasn’t been the easiest while being sick, but its absolutely possible. It is my honor to share my experiences with you all today and I truly hope that to whom they apply, they can be of assistance. Thanks for reading! Happiness and healthiness to you all!!

“History has demonstrated that the most notable winners usually encountered heartbreaking obstacles before they triumphed. They won because they refused to become discouraged by their defeats.” -B. C. Forbes

It’s just been one of those years…or well, few years…

Hi all!

It was my full intention to stay current with my blog and update you all often with what is going on in my life, etc. That obviously isn’t how it panned out. I actually this past spring developed drug-induced lupus from a medicine that shall remain unnamed. It was a nightmare. We had an idea that that’s probably what it was, however that particular reaction is super rare and so until all the testing was done we couldn’t say for sure…so it took A WHILE.

In the midst of this reaction, I was very sickly. My joints hurt so badly I was on narcotics almost daily, which for those who know me know that isn’t normal for me. I developed purpura, a sign of low blood-clotting factors, to which it was proved that I developed antibodies to. I also had severe nausea, vomiting, abdominal pain, chest pain, etc after I would take my med.

After stopping the drug in late march, some symptoms went away quickly. Others did not. It was basically a waiting game-most of you know how that goes…

The point of my rambling is KNOW THE SIDE EFFECTS OF THE MEDS YOU TAKE!! I knew that drug-induced lupus was a possibility, albeit a rare one, but nonetheless a possibility while taking the med I was taking. However, I was not aware of what symptoms this reaction involved. It wasn’t until I noticed the broken blood vessels that I went for blood work and the hematological evidence was observed. Looking back on my logs, I realized that if I would have been aware of the specific symptoms that drug induced lupus can involve, maybe I wouldn’t have gotten as sick as I did as I would have raised the red flag a little sooner than I did.

I don’t live with regrets and blame, that’s not what I’m saying here. This experience was a great lesson-always read everything you can about the meds and know what CAN go wrong, even if the chances are slim. You can never be too prepared or too well-read in my eyes. If you have doubts, ask your doctor or even the drug company. Keep a copy of the full prescribing info either saved on your computer or a hard copy with your meds. It always seems so monotonous when you’re given that info EVERY time you get a refill on meds(almost like a waste of paper, no?), but its important and can at times either put you at ease about a certain symptom you’re having or prompt you to call your doctor asap. Having that small piece of paper could literally save your life. Again, most severe drug reactions are very rare, but rare doesn’t equal non-existent. Being previously briefed on possible side effects will make you better prepared to deal with them if and when the occur. So read, read, read!

On a more casual note, hope you all had a great summer with lots of family, friends, and fun. I am now living in Shadyside while attending college at the University of Pittsburgh. Had a bumpy summer with lots of health issues as usual. Had one of my anastomoses stretched a few weeks ago. Also have active Crohn’s so had to restart meds-6MP. We’ll see how it goes. My doc and I were hopeful that I would not have any disease recurrence, but that just wasn’t the case. We may decide to retry a biologic that I have previously been on, but not sure yet. I also have narrowing in the distal portion of my small bowel, so we need to remediate that in some way. I see my doctor in a few weeks so we will be talking heavily about what the next few months hold in terms of other treatment, increasing 6MP, etc. I am hopeful that I will be able to reach a full remission soon and have at least a few disease-free months/years. I hope you all are doing well, or as well as you can be, and that the fall is a relaxing and enjoyable season with minimal sickness, stress, etc. I am going to try to post more from now on so keep your eyes open!!

Take care,

Year in Rewind

I have really struggled as for what the topic of my first post should be. I want it to be just right. I already told you all about all the events leading up to my diagnosis in the ‘My Story’ tab, so something of more substance is needed. I recently stumbled across my “Introduction Speech’ for my public speaking class and I think it will be a good place to start. So, here goes nothing…

“Nearly one year ago, I got news that would change my life forever. I was diagnosed with Crohn’s, a type of Inflammatory Bowel Disease. I was faced with the decision of being admitted to the hospital indefinitely or staying in school and finishing out the semester. Academics are a big part of my life, so my decision, even though very physically difficult, had to be with the latter of the two choices.

Not only in that particular semester, but in the last year, I have learned things about myself that I would not have learned otherwise. I have learned to look on the bright side of every situation. Even though I have a lifelong, debilitating illness, I remember that it could always be worse. I could have been forced to quit school, I was not. I could have been diagnosed with something terminal, I was not.And even though my life is a struggle a lot of the time, I have learned that I was not put on this earth just to suffer, but to use my experience to better the lives of others.

I have wanted to become a physician since six years of age, although I never really knew quite why. Now I know. I realized, by way of my own doctor, the true value that a doctor-patient relationship can and should have in someone’s life. And if I can show one patient the level of empathy, compassion, and care that my doctor shows me, all my hard work and health hardships will be more than worth it.

This past year has been full of bad news and bad health. However, sometimes it takes an unwanted situation to help us learn a valuable lesson or set a certain goal. Even though Crohn’s Disease has a host of horrible effects and makes my life difficult on an almost daily basis, my diagnosis has brought so much into perspective, both personally and professionally. I have learned that I am strong beyond measure. I have learned to be empathetic to a fault. And I have realised my ‘reason’ for pursing medicine. For all of those things, I am eternally grateful.”

“Search for the seed of good in every adversity. Master that principle and you will own a precious shield that will guard you well through all the darkest valleys you must traverse. Stars may be seen from the bottom of a deep well, when they cannot be discerned from the mountaintop. So will you learn things in adversity that you would never have discovered without trouble. There is always a seed of good. Find it and prosper.”-Og Mandino