Battle Fatigued

               I'm tired.  I'm tired most of the time.  The biggest difficulty I face with Crohn's is that the fatigue keeps me from doing things that I want to do.  My mind is going a million miles a second, but my body cannot keep up.  This has gotten in the way of school, family functions, work, and pretty much every aspect of my daily life including simple household chores. 

               I've talked to many people with Crohn's disease who have had people call them lazy.  We are definitely not lazy.  Our bodies work harder than most, and some people say that our bodies even work too hard and that is why we are sick.  Well I'm here to set the record straight on those that would see us a lazy.  I do anything and everything that my body allows me to do.  Many times, it gives out on me and there is nothing I can do about it but lie down and try to recharge my battery.  When I am unable to do things on a daily basis I feel useless and weak.  I am a pretty independent person and it makes me feel bad that I have to rely on someone else that much.  Luckily, I have wonderful and amazing people around me who understand, for the most part, what I am going through and that I do need help once and awhile.

               Even though I do get this awful fatigue on a regular basis, I still push myself as much as I can.  My biggest pet peeve is when people tell me I can't do something because of my Crohn's.  They think I'm too weak, too fragile, or not strong enough.  All of their talk is just fuel to make me want to try even harder.  Even if I do fail, at least I tried.  Also, when I say that I can't do something:  I really cannot do it.  It is hard to admit when something is beyond my means, but I only tell people I can't do something when I absolutely positively am physically unable to do it.  Sadly, not everyone understands this and sometimes they keep prodding at me to do it.

               So take heart my rangers.  You are not lazy and don't let anybody ever tell you that you are.  Remember to push yourself, but don't overextend and make yourself even more sick.  I am pretty guilty of that myself.  I guess it's that German stubbornness that I get from my Father's side.  It comes in handy, though, every now and then when I feel like I should just give in to the disease and stop trying.  I'm never quitting the fight, and I hope you can say the same for yourself.  Fight on, rangers, fight on.

Test Anxiety: Colonoscopy

               I usually have to have a colonoscopy every year.  This doesn't make them any easier to cope with.  I detest everything about them:  the prep, the time commitment, the discomfort, the awkwardness, and the fact that it takes me a day or two to get back to normal because I always get ill after them.  Usually, there is puking and a fever spike, but it has more to do with the anesthetic than the procedure itself.  For some reason I wake up during the procedure under a regular sedative, so I get to have general anesthetic.  Also, I don't have to completely finish the prep.  What they give me is the gallon jug-o-nastiness which, no matter what you do, tastes like how I imagine Lance Armstrong's bike seat tastes after the sixth day of the Tour De France.  I'm pretty small to begin with so if I don't eat too much the day before I can get by with only drinking about 1/3 of the prep.  This gives me at least some comfort.  My heart hurts for those of you that have to choke down that entire thing.

               I will say one thing about them though.  I find farts hilarious, and it makes me giggle like a seven year old when, at the end, I have to expel all of the air that they pumped in.  Luckily, my fiance thinks its funny too, so we have a good laugh about it on the drive home.  I feel no shame in talking about this, it is not like people with Crohn's have any control over what their bodies decide to do, and we have to learn how to cope with all this stuff that we have to go through.  We really don't have a choice.  If we want to be as healthy as we can be and fight this disease then we have to do these tests on a regular basis. 

               I find comfort in the fact that I can laugh about something that many find too embarrassing to even mention.  And, I am glad I have someone to laugh with me.  I hope all of you out there have someone you can laugh with.  It is such a cliche, but: laughter is the best medicine.  So, I hope this helps you laugh at yourselves.  Don't take it so damn seriously all of the time.  There is a time for serious and a time for silly, and when you're farting  more in a 30 second time period than most people do in a month, it is time for silly. 

A Hymn for Humira

               At my lowest weight I was 84 lbs.  My hair was falling out, my potassium was so low that my heart was in danger of stopping, and I was hardly able to take in more than 500 calories a day on the good days.  I had been seeing a new doctor for about a year, and they were at their wits end trying to find a medication that would keep me alive.  Luckily, the new doc doesn't give up without one hell of a fight.


               They decided to put me on Humira, which was originally intended for patients with Rheumatoid arthritis.  It was an injection that I would have to get every week.  Many people give it to themselves, but the doc wanted to closely monitor the situation, so my mother, sometimes my father, and I would make the hour long drive every week.  The first trip down I was a nervous wreck.

               I can remember most of the truly scary moments in my life, but hands down, the scariest in my life has to be that day.  I was sitting in the little room of the doctor's office, that sterile paper crunching underneath my minuscule buttocks, and I was terrified.  Terrified that it wouldn't work.  Terrified that without it I would just waste away and disappear.   The nurse came in and started preparing the injection.  I wish she would have prepared me for how much it was going to hurt.  Having Crohn's disease, one develops a pretty high pain tolerance, but I was sorely equipped to handle that burn. 

               The injection went pretty smoothly, despite my white knuckle ride on the examination table.  I didn't feel any different, but after the appointment my father and I went to eat at a chain restaurant that specializes in bbq and being famous.  I was actually able to eat!  It was satisfying and I was ecstatic.  The drive back home was long, but it was definitely hopeful.  Hopeful that the fear would go away, and that I could start doing something that I hadn't in a long while:  start living. 

The Curious Case of Ecuador

               Ever since I was a little girl I had dreams of going to the Amazon and the Galapagos Islands.  My father was a science teacher, so I learned about Darwin and his voyage to the Galapagos at a very young age.  In May of 2009 I got my chance to make both of these dreams come to fruition.  The college I was attending was offering a two-week trip to the Amazon and the Galapagos Islands.  I made sure I was one of the first in putting down a deposit to secure my seat on the trip and started the ball rolling on getting my passport and required immunizations.


               Due to my Crohn's disease, there were a couple of shots that I could not get because they were live virus vaccines.  If I were to get these shots I would ultimately develop the affliction that the shots were meant to inhibit.  However, I was able to work with my doctor and the travel company to make sure I had the shots I could get and the proper paperwork, in both English and Spanish, to make sure that I did not end up in quarantine.  Even though I was being extremely proactive and making sure every possible precaution was taken, there were still people around me saying that it wasn't a good idea and I shouldn't do it because I might get sick down there.  They thought my Crohn's would hold me back to checking off two giant items on the bucket list.  Not gonna happen.

               The trip was filled with more amazing moments than I have space on this blog.  It was filled with incredible feelings and overwhelming experiences such as swimming in the ocean for the first time, snorkeling with a penguin, and eating lemon ants.  One thing that I didn't realize while I was down there, but have come to see more and more as I look back, is that I had no Crohn's symptoms during the entire trip.  Nothing.  I've wracked my brain to try and come up with a logical and legitimate reason for this.  What I deduced was that it was because of the food.  Nothing down there has preservatives and they do not use hormones in their livestock.  Most everything is grass fed.  I was even able to enjoy a medium rare steak when I was down there!  Everything was fresh and organic, not processed and packaged.  They also rarely use corn syrup, but instead use natural cane sugar as a sweetener.  It seems that a radically different diet gave me a radically different gut.

               I've read many studies talking about how Crohn's disease is virtually non-existent in third world countries.  Why is this?  Is it the food or something more.  One popular opinion is that these countries don't sterilize and clean things as much as we do.  This over-sterilization cause natural bacteria to be destroyed before it can serve its purpose.  They also do not eat the same kinds of food that we do.  Nothing is processed, pasteurized,  or injected with hormones.  Of course there is no definitive answer on what causes Crohn's and why it is only prevalent in certain types of societies, but my experience in Ecuador has left me puzzled and wanting to know more.  Hopefully more research along these lines will be done and the answer can be found.  Until then, I am going to save for a return trip to South America.

Here is some more info on Crohn's and third world countries and also on parasite treatments for Crohn's:
http://www.ncbi.nlm.nih.gov/pubmed/10973934
http://www.ehow.com/facts_5660901_crohn_s-disease-parasite-treatment.html

Disabled: Volume 1

               For over eight years of my life I was legally disabled due to my Crohn's disease.  Very few people know this about me.  It was one of the most difficult, humbling, and shameful decisions I have ever made in my entire life.  My parents were struggling to keep me on Cobra insurance and I was so ill that I couldn't work in any arena and regardless: no one would hire someone who was in and out of the hospital all the time and would have to call in sick on a regular basis.  Anyways, I swallowed my stubborn pride and filed with the Social Security Administration for SSI benefits.  It was a long and arduous process that included miles of paperwork and various doctor evaluations.  I was approved almost 6 months later and started receiving checks once a month and healthcare through the Medicaid program.  Over the course of the eight years that I received these checks, they averaged around $625.  This amount was plenty when I lived with my parents, but turned into a stress test every month when I moved out on my own.  Needless to say I got very good at stretching that almighty dollar. 

               No matter what my Crohn's was doing, the one thing that always brought me down was having this stigma heaved upon me because I was on government assistance.  I would hear people on the news, friends in public, acquaintances on Facebook, and others talk about how people on these kinds of programs are just lazy.  That they are just looking for a handout and a free ride.  I just wanted to be able to get treatment and keep my family from going broke.  I never lied about my condition to receive benefits, and I never took for granted anything that I was given.  I know that there are people out there who do abuse the system, but those of us who need it shouldn't be punished and persecuted for the actions of a reckless and irresponsible few.  Every time I had to go into the Social Security office or the Department of Human Services I would little by little be made to feel like a completely worthless human being.  Once and awhile I would interact with a case worker that had a genuine sense of caring and empathy and I owe them a great thanks, but mostly I was treated like a second-class citizen and piece of shit.  Someone once said to me that my disability check was "free money."  It wasn't free.  My soul and my heart paid a high price.

               There is much more to tell about my experience of being on disability, but I cannot go into them now.  That is why this post is titled "volume 1."  There is much more to come, including a few surprises and a cameo by a U.S. Senator.  Until then, all I ask is that you hear me when I say that I am not lazy, I do not want a free ride, and I am a strong and capable human being that deserves some dignity and respect.  But, even the strongest of us need help sometimes.  If you are on disability, or know someone who is, you have my respect, and I hope that you are able to one day get on your feet and be healthy.  Also, never stop fighting.  Healthcare is a human right.  None of us are expendable.  Good day rangers.

For more information about the Social Security Administration and SSI please visit the following pages:

http://www.ssa.gov/disability/
http://www.social-security-disability-claims.org/
http://www.disability-advocate.com/

Reefer Madness: Up with Hope, Up with Dope

               First of all, I am not condoning any illicit or illegal activity on this page.  I do not encourage you to break the law.  This is merely an anecdotal sharing of my past experiences.  That being said, let the blog post continue.  After my experience with Remicade several years ago, I was put back on a number of different pills, including Prednisone, Imuran, Pentasa, etc.  I was steadily losing weight and it seemed like my symptoms were getting worse by the day.  By this time I had a port-a-cath implanted in my chest and was receiving I.V. nutrition five nights a week.  Due to repeated blood infections, which I will discuss at a later date, my port had to be removed permanently.  This left me to rely on my own gut to give me the nourishment that I needed to survive.  The problem was that the inflammation was so bad that my body wasn't absorbing enough nutrients out of the little food that I was taking in, due to a severe lack of appetite.  At my lowest weight I rang in at a measly 84lbs, which is bad for anyone let alone someone 5'5".  It got so bad that I was afraid to go to sleep for fear that I would not wake up.  I was constantly on websites looking for alternative treatments, or at least something to get me through until something else could be found that would work.

                 In a forum for Crohn's sufferers I saw a post about using marijuana to stimulate your appetite.  I decided that this was an avenue I needed to try because nothing else was working and I was dying.  Well,  I had dabbled a bit with pot in my high school days, so I knew enough about it to know where to get it and what to do with it once I got it.  I started out only smoking it a few times a week.  While it stimulated my appetite, it wasn't doing anything of enough significance.  So, I upped it to everyday and then to a few times a day.  It worked wonders.  Not only was I able to eat on a regular basis, but it alleviated some of the pain that I was having.  I got my weight up to about 95lbs, which is no miracle, but it was enough to keep me going until other medications kicked in.

                 There are many funny aspects to this part of my journey with Crohn's disease: tales of munchies induced flavor combinations and buying a 20 sack with my disability money, but it was a very serious decision I made to use an illegal substance to keep myself alive.  And I truly believe that it did save my life.  I have no regrets.  We should not have to break the law to help ourselves.  Laws need to be changed and more research needs to be done.  Overall, what is needed for a person to be well should be available to them.  Smoke 'em if ya got 'em?  Smoke 'em if ya need 'em.

Prednisone: to dance with the devil

               The one good thing that I can say about prednisone is that it works.  Every time that I have been on it my symptoms have subsided, but at what cost?  The major dilemma I personally have with this medication is that it's side-effects are usually an even trade for my Crohn's symptoms.  In exchange for the pain, discomfort, fatigue, frequent bathroom breaks, etc.,  I got sleepless nights, a scatter-brain, moon-face, an inability to focus, night sweats, and an overall feeling that I was teetering on the edge of sanity.  The taste was uniquely awful as well:  I took to using pudding to help choke them down. 

               I haven't had to take prednisone for more than around a year at a time, most recently tapering off of it this past Spring, but it has left a mark on my subconscious that makes me shudder whenever it is brought up by the doctor.  I would not recommend refusing prednisone if it is recommended by your doctor, I am merely relating my experiences with it to you.  The same can be said for any other medication or treatment that I discuss on here.  Still, I can spot "prednisone-face" or "moon-face" at thirty paces.  This drug is also prescribed for a myriad of other conditions.  So for those of you out there currently prescribed this much loved and much despised medication:  I feel your pain and can sympathize with the puffiness.

Remicade

               Remicade was the first heavy-hitting drug I was put on to treat my Crohn's disease.  I was on a pretty high dose of Prednisone along with Imuran.  My first treatment made me feel like a brand new person.  My symptoms completely went away, my energy came back, and I started to put on a few pounds.  After several weeks, however, they started to come back so I had to schedule my next infusion soon.  I rode the elevator with my mother to the fourth floor of the hospital to the infusion center.  They got me comfortable and got the I.V. started with much more ease than normal.  The nurse brought in the bag and hooked it up to my line and walked back out of the room.  I barely had more than a few cc's of Remicade when my chest became very tight and my vision started to tunnel.  In less than a minute I was no longer able to breathe.  They had given me Benadryl before they started the infusion, but I was still having a severe allergic reaction to the Remicade.  My blood pressure bottomed out and the nurse frantically pushed buttons on the pumps as another put an oxygen mask over my face.  It was one of the scariest moments of my life.  One second I was fine and the next I could not take in a breath.  They were able to stabilize me and sent me home a few hours later.  The doctor I was seeing at that time wanted me to try the infusion one more time a few weeks later. 

               That next infusion triggered an even quicker allergic response and Remicade was forever checked off the list of possible treatments for my Crohn's disease.  I know many people that thrive on Remicade and it has done wonders for their symptoms, keeping them in remission for years on end.  My main point in this post is that there are so many different treatments and medications for Crohn's disease and new ones are coming out all of the time.  What puts one of us into remission could cause a near fatal reaction in another.  We all react differently and our Crohn's varies in intensity from month to month and from person to person.  When asking others about how it will be to receive a certain medication make sure you ask a wide variety and get many different opinions before you decide.  Ultimately, put that trust in yourself and go with your gut.

Support System

               I am very lucky to have a support system of family and friends to be there and help me when I get sick.  This wasn't always the case.  My friendships from high school were the first casualty of my Crohn's disease.  Some people, especially teenagers, find it hard to stick around with someone who is very sick and doesn't completely understand what they themselves are going through.  My biggest support has been my parents.  They were there when I had no friends and no one else to turn to, and this was the case for a few years.  Today I have amazing friends that know about my disease and are there when it hits hard.  The strongest link in my support chain is my fiance.  He is there every day and sees what no one else does and is there to hear what I wouldn't be able to tell anyone else. 

               If you are fortunate enough to have a great support system, make sure they know how much you appreciate all of the late nights, insurance battles, doctor's appointments, tests, hospital stays, ER visits, prescription runs, picking up the slack during a bad flare, carrying us when we can walk no farther, helping us out of the tub, and putting up with us when we are on Prednisone.  This are just a sampling of what they do for us.  For those out there who do not have a support system, we are out there.  Reach out and we will find you.  We are on the net, on Facebook and Twitter.  Some of us even write a blog!  We are there for you to share in your lows and congratulate and praise your highs.  None of us are alone, or at least we don't have to be.  Another good idea is to ask your doctor about local support groups.  And,  I call on all of the rangers out there to be there for one another.  Even though this disease affects each and every one of us differently, we all will live with this disease until they find a cure.  Keep fightin' my fellow rangers.  Fight for those who do not have the strength to fight for themselves.  We will overcome.

Everybody Poops: Down with Diarrhea!

               Frequent trips to the bathroom is not the only symptom of Crohn's disease, but it is safe to say that it is the most embarrassing and troublesome. All of us Crohnies have horror stories about our bathroom experiences, but don't always have someone to share them with.  These not-so-glamorous side effects can make it hard to not feel completely alone and misunderstood.  It affects every aspect of our lives from work to dating to just going out to have a good time.  How do you broach the subject when you meet someone new?  I've had the disease long enough that I'm not too shy about telling people what's what.  When I first started dating my fiance I would spend quite a lot of time at his house.  Hiding my "problem" came to be more and more difficult as I was spending longer and longer periods of time with him.  Finally one night, when I knew there was no avoiding spending a considerable amount of time in his bathroom, I just flat out told him: "Look, I'm going to blow up your bathroom occasionally.  There is nothing I can do about it."  Luckily, I picked a good one and he took it pretty well.  We still laugh about it to this day. 

               What I've learned over the years is that if you are not embarrassed by what your body does, no one else is going to be embarrassed for you.  Just be honest and upfront with people.  You condemn yourself to a lonely existence if you don't.  If you can't talk to someone, hell talk to me.  I will help you laugh at yourself.  Don't take it so seriously and I guarantee the people around you will come to understand what you are going through even more.  In the meantime, familiarize yourself with websites that show where public bathrooms are located, such as www.sitorsquat.com and also print yourself off an "I can't wait card" which are available on the net from many Crohn's and Crohn's related organizations. Another little hint:  I sometimes carry pocket spray air-freshener in my purse.  So, my fellow rangers, shout it from the rooftops: "Everybody poops!  But probably not as much as I do!"  Trust me, you will feel better and freer.  Don't let this disease confine you any more than it already has.  Honesty, that's my policy.

Humira Injections

               OUCH!!!!!  My homehealth nurse was just here and she gave me my Humira injections.  I get two at a time every other week.  She always tells me how much her and the other women hate giving me the shots because they hurt me so much and so they feel bad.  We've tried everything to get them to not hurt as much, but there seems to be no rhyme or reason to why sometimes they will just pinch a little and other times I almost come out of the chair swinging.  The pain is worth it though.  Humira saved my life and has kept me alive when no other medications were working.  I just hope it stays that way.
http://www.youtube.com/watch?v=MZ-9vDeJWu0

Diagnosed

               I'd had stomach problems as long as I can remember, however the catalyst for my diagnosis had nothing to do with my stomach or intestinal fortitude.  It began with pain in my chest.  I was still in high school at the time.  The pain started during the fall and continued for several months.  I thought it was just heartburn, but it turned out to be esophageal ulcers.  Next, I started to drop weight.  A lot of weight.  I was never fat, but I was thick and bordering the realm of chunky.  I went from around 140 lbs down to 120 lbs in the span of a few months.  That is where the stomach issues came in.  My appetite had always been extremely good:  I could polish off frozen pizzas without batting an eye.  My desire to eat had now dwindled to around 1000 calories a day, and I was in the bathroom every twenty minutes.  I was only seeing my primary physician up to this point with only sporadic visits to several local specialists.  One specialist decided to do a full scope: upper GI and a colonoscopy.   They found severe inflammation around the terminal ileum, which is where the small intestine and large intestine come together.  This is also where they discovered the esophageal ulcers which had now spread to my mouth and gums, making it even more difficult to eat. 

               So there I was, two weeks away from graduating high school, three weeks away from my 18th birthday, and I was told I had an incurable disease that was going to affect every aspect of my entire life.  Kind of put a pall on things.  I can't even remember the name of the pills they put me on to start with, all I can remember is that I had to take 20 or so of them every day, along with several doses of Prednisone, a medicine I have done battle with many times since.  Appointments were made with more specialists and a trip up to Mayo Clinic in Rochester, MN was the next step.  I don't remember much of that trip, except being wheeled around through various tunnels and corridors.  A few weeks before I went up there giant red spots began to develop on my legs.  They were hard, warm, and the pressure in them made them feel like they would burst if I stood up.  Walking became extremely difficult, and the reliance on my parents became almost complete dependence.  That is the biggest thing I have to stress about this disease.  No one can go through it alone.  Talk to people, answer their questions.  Even if it's the same bullshit you've heard 20 million times, answer it.  Hell, start a blog!  Trust me, it helps.  Much more to come, I promise.  There is Remicaid, infusions, port-a-caths, and embarrassments galore.  Keep on fighting my rangers.  I know I am.