Friday, August 18, 2017

When Do I Start?

Graduating from nursing school was an amazing accomplishment for me.  I didn't know if Crohn's Disease would ever let me be successful because it always seemed to show up and just be in the way. It slowed me down.  The nursing program I was in was a year long program, and there was no pausing for illness.  I would have had to start over if I couldn't make it all the way through as this was a technical training course and not traditional college.

But as you now know, I did graduate and so the preparation for the NCLEX test began.  NCLEX stands for the National Council Licensure Examination.  The passing of this test would show that I was prepared to be a nurse.  This was a big deal where tests are concerned.  If I didn't pass, I couldn't get a job in nursing.  I'd have to wait and take the test again if I were to fail.  I needed to pass that test to get a job in my desired field.
 Studying didn't end once I graduated.  I needed to be prepared for this test, and it was of top priority.  The day I finally took the test found me with all kinds of butterflies in my stomach.  It seemed like the test took a very long time to complete.  It did have a lot of questions because it's important to make sure  the person is academically competent.  My nervousness and the time I took to really read the questions and scenarios and answer as well as I knew how made it seem longer.  Once it was over, I'd like to say that I was relieved, but it wasn't quite like that.  I honestly felt that I didn't do well on the test.  I didn't feel that I answered the questions with any certainty.

Then I had to wait to get the results of the test back.  Another classmate and myself had taken the test the same day, and we kept each other posted on whether the results were available or not.   Finally they were, and we both had passed.  And finally there was the much needed relief.

Next step: get an adult job.  I applied at several different places of course, but where I wanted to be was in the hospital.  Thanks to Crohn's, a hospital was like my second home.  And that turned out to be the location of my first nursing job.  My position was on the Telemetry unit for cardiac monitoring.  I would start out on day shift as part of my training, but my position was for night shift which I expected being straight out of nursing school.  I liked the idea that this floor was for a more specific area of health care and not just general care.  I felt like I was doing more specialized work.

What I didn't like was the craziness that the day shift could provide as patients needed to be prepped for procedures, for discharges or for admittance to the floor.  Plus, some doctors (not all) could be intimidating whether they meant to be or not.  And rude.  That could actually occur more on night shift when you had to call the doctor on call who may have been sound asleep before the phone rang.  And they didn't know (or care) that I was a new nurse and would spat out orders quickly with no desire to repeat instructions.  Also, it was hard to get adjusted to being awake at night and sleeping during the day.  My dad worked second shift at his job and one day he took me to get new shoes for work I believe.  Thankfully, he drove because I fell asleep in the truck and woke up at our destination wondering what happened.  It was like I never really slept.  I quickly felt that this wasn't the job for me.

I had another job offer during this time.  It was for a floor nurse at an assisted living facility on the same road as the hospital where I was currently employed.  The hours I would be working would be during the day.  I was pleasantly pleased with that.  I wouldn't have to deal with doctors directly in most cases as their office nurses would be my point of contact, or I would call the resident's family, and they would take care of the medical issue as they desired.  The residents didn't come and go like patients do at the hospital because they are residents of the facility; they live there.  There was a respite option where the individual just needed a place to reside temporarily maybe after an illness, and they needed some assistance until they regained their strength and could return home.  Sometimes, even those people decided to stay as they found the companionship of others comforting, and the assistance they received was a relief.

This place sounded like a less stressful option for my career field.  I turned my time in at the hospital, disappointed that I didn't enjoy it like I thought I would.  It was supposed to be my dream job, but after a couple of months, I realized that wasn't what I wanted.  I moved on to this new job and different area of nursing.  

Sunday, August 13, 2017

Learning About the Other Side of the Needle

The school I was attending for a drafting certification after high school is called Tennessee Technology Center.  It also offers a course to become a Licensed Practical Nurse.  The nice part of this program in my opinion is one: it was quicker than your traditional four year program.  It would take me a year.  I would be learning specifically what I needed to know about my job as a Licensed Practical Nurse.  Two: there were no papers to write.  As much as I enjoy writing, I despised writing research papers.  It seemed like I put so much work and thought into them, and it just never got me more than a C for my final grade.  Sure, that's passing, but I'm a perfectionist and my brain didn't handle this well.   Three: if one needed to get an advanced education quickly to get a desired job, well this path would work well.

A downside to the route I took was the limitations on what my certification would allow as far as skill.  I had basic nursing skills.  Thus, job opportunities were narrowed and the salary wasn't near what a Registered Nurse would earn (nor should it be; just pointing out the down side).

I can't recall what all was required to get into the class, but one thing stands out; the interview into nursing school.  It wasn't the actual interview.  I don't recall the people doing the interview or the questions they asked.  I recall the outside events that surrounded that day.

My grandmother had passed away from a (can I say thankfully?) quick battle with cancer.  The time of illness and her death were devastating as I can say she was the matriarch of our family.  She was my first grandparent to pass away.  And she held our family together.  (We didn't just fall apart and turn against one another, but it's just one of those situations where you don't realize what you've lost until it's gone.)

My interview for nursing school was scheduled for the same day as her funeral.  The interview had been scheduled in advance and with the structure of the program, they couldn't reschedule the it for me.  Instead, we were able to set the funeral for a time at which I could attend after my interview that day.  I went to the interview with a heavy heart.  And a sense of determination.  My grandmother knew of my desires, and I felt as though watching her struggles throughout the illness and in her last days and the experiences that gave me might have helped in the interview process.  They accepted me into the class!

I also met a great friend that day who was happily expecting her third child very soon.  She would turn out to be an awesome mentor, encourager, and study partner.  She had a drive about her that my 18 years had not yet obtained.  And she set me up with my first boyfriend.  (No, he isn't the man I'm married to today, but that experience played a part in who I am today like all experiences do.)  I couldn't have made it without her.

Nursing school and my Crohn's didn't seem to be too against each other .  There were times my stomach would bother me worse than other times; particularly before big tests or performance of nursing skills we needed to show.  My nerves would be all in knots.  But I feel like I made it through the year fine.  I actually never missed a day of school (although I was late to clinical once).  I can't recall any flare ups that had bothered me like they did in high school.

School was an experience that opened me up to different people, their lifestyles, their various stages in life.  Many of the students were looking for a second career.  Many had families.  (This is where the quickness of the program becomes valuable.)  And all of us were looking to better ourselves and our futures.  The majority saw me as just a kid I think.  (Which I was.)   I didn't mind.  I felt watched over which was comforting especially after leaving high school and being so nervous about that change.  And I have never gravitated toward people my own age.  I tend to seek out those that are older than me, people who have "been there and done that".

I wish I had some awesome clinical stories, but I can't think of anything that stands out.  In general, it was all eye opening for me: bathing people at the nursing home who couldn't do anything for themselves, feeding people (I'd never done that), crushing medications to put in that food if they couldn't swallow medications well.

Starting IVs was a scary task, yet I felt able to do it with able of the times I'd been stuck.  We got to do that task on each other in class first.  It may or may not have ended some friendships.  (Just kidding.)  We all managed to do well with that.

With my age and not being married yet, I hadn't seen a lot physically as far as the other sex is concerned.  As you can imagine, my eyes saw more than I really wanted.  We'll just leave this right here to keep from being too graphic.

And I met all kinds of people in the various medical settings: hospital, nursing home, doctor's office.  I didn't realize how different people were, how differently people viewed things and how they handled their lives; so many personalities out there.

But I made it through nursing school (by the grace of God).  I went to graduation dressed in a crisp white uniform topped off with a nice hat.  I was pinned with my nursing pin and received my LPN certification ready and excited for the next step: getting my official license.

This post is less informative as far as Crohn's goes, but I hope it provides some encouragement if one is looking to go further in their education.  Next up: the big test and my first adult job!

Monday, August 7, 2017

Moving On Up

I pushed through high school with all that I had.  I was able to go to some school related events (watching sports events, attending dances, etc.) without much interference from my Crohn's Disease.  There was prom, too.  My twin sister and I were able to double date with some really nice guys.  It was an enjoyable time; even more so since I was healthy (all things considered).  And dressing formal is nice once in a while.  Of course there were lots of pictures taken. I even got my normally curly, frizzy, and rather unruly hair straightened.  The stick straight texture was so strange.  My fingers flowed right through it without getting tangled and without making the volume way too large for my taste.  The new look didn't last long, but it was nice for a brief change.

Now back to my sister:  Did you notice I said twin?  We're fraternal twins, and although we've had people tell us that we look alike, I strongly disagree.  Our husbands can't mix us up.  And we've never  been able to pull off a swap as a joke on other people.  We probably looked the most alike the first couple of weeks or so of our lives, and that was because we were bald.  But as our hair grew in and our features changed, it became apparent that she looked like our mother, and I looked like our father.  Her hair is a lighter brown (and not quite as curly) and mine is dark brown, almost black.     
I've been asked if she too has Crohn's.  No, fortunately she does not.  Our health has been as different as our personalities.  

As far as my dating life...well, there really isn't a lot to say there.  I don't believe it had anything to do with me being sick.  I'm usually a quiet type of person (except with my husband who could use some peace and quiet from me, I'm sure!).  I was even more quiet as a kid (painfully shy) and as a teenager.  I kept to myself most of the time.  My favorite place was probably at home in my bedroom reading a book.  I don't think that this way of being was influenced by my health.  It was just my personality as I would still rather be home than anywhere.  And my parents are like that as well.  We are a family of homebodies.  (Is that a word?)  Plus, I was never interested in dating just to go out and mingle with a guy.  My heart was set on finding "the one".  The one thing I knew I wanted to do, or become, after high school was to be a wife and a mother. (This would come with time)

When graduation time came, I remember feeling lost and apprehensive.  By now, I'd spent almost four years living a life with Crohn's Disease.  I was used to living with it in the surroundings and situations I was currently in .  There were people who knew of my health issues and what I was dealing with to some degree, and I felt safe and comfortable with where I was and with who I was with.  

I was a weirdo who didn't want to leave high school  What I wanted was some consistency where the ups and downs of Crohn's didn't allow for that.  I didn't really even know what I wanted to do after high school.  I'd spent so much time trying to get better physically that thinking about anything beyond the present was hard.  But I made my choice based on a drafting class that I took while in school.  I had a great teacher who desired to be the best example for his students.  The atmosphere of the class was enjoyable. So what's so bad about that you ask?  Well, my heart wasn't in the actual subject of drafting.  It was hanging on the memory of the class.  My decision was made incorrectly, and I believe that to be the case because I didn't fully understand the power of prayer yet.  If I had given it to God, He would have shown me which way to go with my future.  

But I chose my path alone.  At the time that I finally realized I had made the wrong decision regarding my future, it seemed like the end of the world; remember I had lots of anxiety.  In reality, it was just a wrong turn (or maybe the right one).  It was a detour of sorts.  God led me back to the road I was supposed to be on .  I felt the pull to go into nursing.  My times in and out of the hospital, doctor's offices, as well as being in contact with various medical personnel gave me insight from the patient's point of view that maybe others wouldn't have.  I was excited to make this change.  

Wednesday, August 2, 2017

Anxious Much?

Anxiety and my illness were not compatible.  But they did seem to go together.  One followed the other one.  It could have been that being sick caused my anxiety.  And then my anxiety would make my IBD symptoms seemingly worse.  It was an endless cycle.

Eventually things progressed with my Ulcerative Colitis (or stayed the same maybe?) to where my gastroenterologist at the time suggested I move up to the adult gastroenterology department.  She had prescribed all the treatments and medication she knew to try.  And she never was 100% certain that I had Ulcerative Colitis.  It still could be Crohn's Disease.

At 17 (not quite an adult legally but close enough for this situation), I said goodbye to pediatric gastroenterology and moved on to the adult gastroenterology department.  There, I met my current doctor (who had training and further education through the Mayo Clinic) as well as my colorectal surgeon.  I didn't yet need a surgeon, but it was good to establish a relationship with him in case a situation were to arise where his services were needed quickly.  The collaboration between the two doctors made an impression and helped to make a more accurate diagnosis for what I was dealing with.

I got to have yet another colonoscopy in which the two of them were able to look at the results and make a diagnosis and a plan.  My new diagnosis: Crohn's Disease.  And it was said with absolute certainty.  Yep, 3 years of Ulcerative Colitis as my named illness turned into Crohn's Disease.  The "red flags" as they put it pointed my troubles to be labeled as Crohn's.  I don't remember what those red flags were.  Maybe it was due to them seeing that part of the small intestine was affected as well as my large intestine (which we knew).  With Ulcerative Colitis, only the large intestine is involved.  With Crohn's, the whole digestive tract can be affected.

Having a sure diagnosis felt relieving to some degree.  The course of treatment didn't change much however.  There were some other medications to try, but the prednisone was still there as the first line of defense to get the active disease back under control.  This happened off and on for a few more years.

I'd have a flare, go on prednisone, try another medication, wean off prednisone, and my body knew when the prednisone was gone.  Another flare would occur not long after.  Each time this would happen, I'd have to try a new medication.  One involved me injecting myself.  (And I thought swallowing a pill was tough!)  The medication was called Humira.  It came in a pre-filled syringe.  I'd select either side of the thickest part of my abdomen or either of my thighs for the injection site.  The syringe had a trigger button that, once pushed, would set off a spring-loaded needle in the injection site.  It was shocking as it was so sudden.  And the injection burned slightly.  Of course, the first few times I did it, I was very anxious about it.  It's one of those things you can't imagine having to do to yourself.  But I managed to go through with it.  It still caused anxiety, but not as much as the first few times.

By the time I got used to that process of medication administration, it appeared not to be working.  Yet another flare up happened.  I was then put on a medication called Remicade.  This medication was introduced intravenously (every few weeks maybe?)  Anxiety was present there as it was an added item on my healthcare schedule; something I might have to miss more school for.  Plus, it wasn't cheap.  I don't know how much my parents paid and how much was covered by insurance, but at 17, I was aware of the fact that this medication was by far the most costly of all I'd tried.  But I didn't have to be concerned with that long as it didn't seem to work either.

There was a lot of anxiety with the uncertainty of the disease process: whether or not a medicaiton would work, when would my next flare up occur, what damage was the prednisone (and even the disease itself) doing to my body, how much school I would miss.  But a lot of anxiety would come from being alone.

No, I wasn't physically alone.  Many people were supporting me through prayer and emotional strength.  And of course my parents were there through it all.  But the majority of these people had not been through this particular issue that I was dealing with.  They weren't teenagers dealing with a chronic illness.  This isn't a woe-is-me story but a viewpoint that sometimes things can be made a little easier to deal with if you have that someone to talk to that has been there and done that.  They may know tips and tricks to make things easier.  They might have even come through there situation victorious which can provide hope.  At this point, I didn't have that to the extent that it would have been helpful.  That remembrance is part of what has led me to write this blog.  I have hopes of reaching someone like I was while I was sick; helping someone who's walking through the unknown.  Please, share this blog with those you know who have Crohn's Disease, Ulcerative Colitis, a chronic illness.  Feel free to engage here and ask questions.  I'm here to try and be of help and let others know that they aren't alone.  

Thursday, July 27, 2017

Back to the Books

Now it was time for me to resume my education.  How I had made it through each day before diagnosis is beyond me because now it seemed even tougher.  Maybe in part because I had gotten behind in my classes.  I was a decent math student until I had to take Algebra.  My math skills went downhill from there.  Add in an illness and subsequent absences from class, and I became terrible in math.  I was taking an Honors Algebra 1 class.  It seems like I passed the class with a low D.  This is no reflection on the school system or the teacher by any stretch.  More so, I believe it was a reflection on just how hard it was, and still is, for me to understand more advanced math.  Even base level equations pose a struggle for me to this day.  All of my other classes I did fine in.

There was an incentive to doing well in the classes I guess you could say.  If a student could keep an A average throughout the term as well as stay within the number of days allowed to be absent from school due to illness or whatever the case may be, the end of course test could be omitted.  I could meet the grade average requirement (except in math of course).  But I'm not sure I ever met the requirement regarding absences.  I'd easily miss school with the ups and downs of my (then thought to be) Ulcerative Colitis.  Regardless of the grade I managed to end the term with, I still got the joy of taking that last big test.  I'm sure it seemed unfair at the time; to be able to keep my grades up while being sick and being absent from class because I was sick or at appointments.  But those were the rules.  Now, I can see and understand that there are those that possibly would miss class quite often if such rules weren't in place and thus enforced.

Regardless of how well I did with my class work, getting up and going to school was challenging.  When I was on prednisone, it made me feel crazy and weird.  Plus it made my outward appearance change which was hard for me to deal with; the acne that seemed to take over the majority of my body, not just my face; the swelling that changed my clothing size quickly so that I would have different size clothing depending on where I was in the cycle of illness and remission.  And those heart palpitations that would hit out of no where and make me feel like my heart would bust out of my chest before it passed.  

There were times that I just didn't feel well.  Particularly, this would be the case after the prednisone had been tapered off, and the medicine had left my system.   This medication seemed a guarantee that my IBD symptoms would remain silent.  But when a flare up would occur, it was as if the symptoms would return with a vengeance.

It was hard facing my peers everyday with these changes.  I was fortunate to never be bullied for my differences.  But then I wonder how many people actually knew that something was going on with me.  And if they knew something was amiss, did they know what it was?

I was carrying around a seemingly invisible disease; apparent to me of course as I was the one going through it and to those closest to me who had either seen my struggles first hand or had been informed of my situation.  But to the person on the outside looking in, would they know unless I or someone else told them?  It wasn't something I really wanted to announce.  "Yes, I'm sick and I have bloody diarrhea everyday, multiple times a day when I'm having active symptoms due to a form of IBD."  Yea, I don't think so.  There was a guy who did actually ask questions.  I just couldn't build up the self-confidence to tell him the truth of the situation.  I tried to play it down.  Basically, I guess you could say I lied.  Eventually the holding back was hard and would lead to some lonely times.

Sunday, July 23, 2017

My Greatest Experience

The medication routine was getting into full swing.  My new way of eating was taking some getting used to.  And now, I just had to learn how to live with a chronic illness.  Oh sure, I had been living with one, with all of the symptoms and struggles, months before an actual diagnosis was made.  But I was too naive to think anything was wrong with me.  Well, now I knew.  I had an illness.  And as I said, it was a chronic illness.  I was going to have to live with this for the rest of my life.

The rest of my many teenagers, how many people even, think about the rest of their life?  The furthest time into the future that I could consider was getting to Christmas and having time out of school for that.  After Christmas passed, I was readying for summer break, so what's the rest of my life supposed to mean?  I couldn't understand that.  How much living could one have done in 14 years to be able to consider life 15 years later, 20, 30, etc?

Sure, I had developed and changed mentally, emotionally, and physically.  But my life experiences were limited to childhood growth.  I had participated in organized sports (basketball).  There was school of course.  And there were the various clubs and activities to envelope one's time and broadened ones view on life.  That was about it for me though.

Except for one big life experience.  (Well, it was and still is big for me.)  Before I begin with this, I want to say that I realize that this is not something that all who read this will agree with or even desire to read about.  However, I make no apologies for what I'm sharing here as my sole desire is to tell of my journey with IBD, the struggles and the triumphs as I view them.  I hope that all who read this, regardless of your stance on this (or any subject matter that is brought up) will read with an openness and not feel a sense of pressure on my part to pull you to accept my views as your own.

Part of my journey started before I even developed symptoms.  This carried through to the diagnosis and even to this very day.  I grew up in a home with a foundation built on God.  My dad is a Baptist preacher.  Even though both him and my mom weren't taken to church on a regular basis during their childhood, they found it of great importance to raise myself and my siblings with more consistent Biblical instruction and worship time.

I met Jesus (of course not face-to-face) spiritually on my 14th birthday.  My thinking is that He chose that day for me because He knows how hard it is for me to remember dates period; so important ones like this would be a challenge for me.  When I got saved, I was alone, in my bed.  No one was speaking to me or prodding me to do or say anything.  It was at night.  And it was just me and Him.  I knew I was missing something or more like someone.  And that Someone was Him and His spiritual presence in my heart.

I'm thankful for this experience that will be with me for the rest of my life.  I've been able to turn to Him on so many occasions since, regarding decisions that needed to be made; a lot of which were in relation to my health.  And other decisions related  I would need Him often as I would live with the struggles of a chronic illness.

Wednesday, July 19, 2017

At Least I Can Eat

I finally made it home after my first ever hospital stay.  And my how things had changed in just a matter of months.  I went from being a perfectly healthy 14 year old, to a very sick one quickly.  My freshman year of high school started out seemingly normal.  Now my life would be forever changed.

Ulcerative Colitis-I have this diagnosis that I still don't really understand.  It's just nice to have a name to give my troubles.  Which, like I mentioned in the previous post, seemed to be resolved thanks to the handful of medications I was now taking (Asacol, 6-MP, prednisone, and maybe more but that's the ones that stand out from memory).  With all of these floating in my stomach, I needed to make sure to eat.  Of course with the prednisone, I had no problem eating.  But now my diet had to be changed due to the condition of my colon.

Now, I could at least eat which is tremendous progress and a relief compared to a few months ago.  There were foods to stay away from now and foods that were suitable for a person with Ulcerative Colitis as recommended by my gastroenterologist.  They recommended a low residue diet.  I also stayed away from dairy and acidic type foods.  And I steered clear of spicy foods.
As far as low residue-at this point in my life, I had yet to develop an appreciation for fresh fruits and vegetables.  I didn't really care about things that grew on trees or came from the ground.  The salads that I now eat almost daily, it didn't hurt my feelings that I couldn't eat those.  I wouldn't put lettuce or tomatoes on my hamburger.  I actually had corn (that had been cooked), but it was fresh from the garden.  Even with that, it didn't settle well.  It tasted great, but things ended poorly.  (Someone with a history of severe diarrhea doesn't need the aid of a high fiber diet.)

Then there are the whole wheat/whole grain products.  The "loss" of this was like how I felt about salads.  White bread, white rice, white pasta were my preferred choice.  Original Cheerios, I thought to be dull, and that's been the case until the past couple of years.

I essentially went on a lactose free diet.  My parents bought a milk called Sweet Acidophilus.  This is where my new diet would hit hard.  I was, and still am, a lover of milk.  And now I would have to drink this seemingly foreign concoction?  That first taste was terrible!  But come to find out, that first drink was what my mind told it to taste like.  The reality is that it tasted like regular milk.  How about that?

When I stayed away from foods with acidity, that broke my heart.  Spaghetti and pizza fit in this category.  We tried to make this work.  At least for spaghetti.  This was a wacky, desperate, and just plain wrong combination, but eating spaghetti plain is not good.  Spaghetti sauce would be too much for me to try and digest, and I was staying away from dairy, so Alfredo sauce was out.  I could eat ground beef so that was added, but of course the combo was still dry and bland.  Why not put ketchup on it?  Yes, I could eat ketchup, and yes, I tried it on it.  It wasn't dry at least.  And ketchup pairs well with ground beef.  Spaghetti noodles, not so much.  This was so sad and awful.  But like I said, I was desperate.
As far as pizza though, we didn't find a way to make that work that I remember.  Pizza just had to be deleted from my life.  The pizza sauce, the cheese, and possibly the sausage with its spices, I'm sure would have sent my intestines into overtime.  It was terrible.  I love(d) pizza!  What teenager (or human being) doesn't?  And it seemed to be the meal of choice for all events requiring food.  (Not really all of them, but it was the case for many and one too many for me.)  Again, sad and awful.

With no cheese in my diet and with my staying away from any potentially spicy foods, I resorted to eating hamburgers and french fries at Mexican restaurants.  They aren't known for those types of food either.  But who knows what kind of havoc those Mexican spices paired with cheese and lettuce and tomatoes and things would have wreaked on my diseased colon had I tried to eat a fajita or a taco salad or something.

Then there was ice cream.  Again, what teenager (or human being) doesn't like ice cream?  Although there may have been lactose-free versions of this available at the time, I can't recall trying any.

My family did their best to accommodate these new dietary restrictions buying foods suitable with the recommendations of my doctor.  And meal preparations had me in consideration, too. (like with the spaghetti).  If a spicier meal or just one that was harder for me to digest was being prepared, there would be a separate preparation for me (like with the spaghetti).

It was understandable why I needed to abide by these new dietary changes.  If I wanted to try and keep my symptoms under control, this was a good way to do it.  I didn't go hungry.  (Well, I did because the prednisone made me feel that way 24/7, but I wasn't malnourished.)  It was just very irritating.  Like being on a weight loss diet that says you can't eat this or that.  My problem is I didn't feel the leeway to give in to my temptations.  That could lead to a relapse.  I didn't want that.

It was isolating, a little humiliating to some degree.  I didn't (and still don't) like to be singled out.  And with my meals having to be different than those around me, it made it feel like the attention was on me.  That of course was never the intention.  Seeing others eating foods I loved brought on a lot of "why me?"