Let it Be.

One of my greatest fears is getting a flare up due to my ulcerative colitis and unfortunately, it seems like I'm in the midst of one now.

There are some diseases or conditions that people suffer every day that we don't know the type of struggle they face day in and day out.  Every time I hear of someone with the same condition as me, a part of my heart breaks because I know the pain they can suffer if their medications don't work. 

At the current time, mine seem to be failing me.

Unfortunately, this means that I often have to justify the pain of eating because I need to enjoy the taste of the food rather then avoid it and deal with the hunger pains.  I have to deal with the looks of concern from my mom whenever I have pains in my stomach that makes me need to pause a show we are watching.  And I have to be a rock of strength during the especially tough times because I don't like having this condition be a weakness.

A few weeks ago, when my face broke out like crazy, I found out that I was on some "big" medications for such a "young girl".  Not going to lie, those confessions from the nurse practitioner and another doctor scared the crap out of me.  These medications that wear down my immune system? Yeah, not very much fun.  The medication that makes me tired all the time?  I love not being able to work a normal nine to five job without being exhausted by the end of the shift.

Ulcerative colitis is something I would never wish on one of my enemies, let alone to anyone I love.  I am lucky to have a great support system whenever these lows come around to try and make me smile, and forget just for one moment that I am not normal.

 

Anything Can Happen....

Boy, oh, boy is 2013 welcoming me in with open arms.

I haven't been feeling well and while I try to grin it and bear it, it's starting to suck to always be sick.

I've been getting countless blood work done, and my INR does not budge at all.  I'm on a very high count for the Warfarin and nothing is changing week in and week out.  I try to keep smiling and keep a positive attitude with everything, but sometimes it's very tiring.

And I don't think most people around me understand how truly draining this whole thing is.

I have become a sort of recluse since the first of the year.  Other then a quick overnight trip to Boston, I have stayed home basically every weekend because I either become too tired early in the evening, or just don't have the energy to pretend.  Yes, I've had a boring social life, but I don't want to continue being the sick girl.  Instead, I just stay in my house, and read books and watch different T.V. shows.  Hello guilty pleasures.

Tomorrow I get to talk to my inside doctor and basically tell him that he could proceed with trying to get some more tests done to determine whats going on with me.  I was nervous about the whole new insurance thing, but now that I called Human Resources, I have a little more faith that I won't be without insurance at any point after turning 26.

But here's to a better few weeks where the stomach gets magically better.  Guess I gotta keep the positivity flowing somehow....

I hope everyone had an enjoyable holiday filled with smiles, laughter, friends, family, things we are thankful for and of course, tons of food.

As this holiday season approaches, I can't help remember that two years ago, everything was beginning.  The end of my old old "normal and the transition of a new "normal" that I never thought I would get used to. 

However, I slowly am getting used to it....

I have started my taper for the steroids on Black Friday.  I did not want another miserable holiday and decided like Black Friday was a good a day as any to start decreasing some of my medication. After speaking with Dr. I, we determined we would try a faster taper then I'm used to, but it all depends on how my body becomes reacts to it.  For now though, that means I'm going down 10 mg every Friday until I'm done.  Which may mean I have the best Christmas present EVER.

Last week, I had to inject myself with two more of the Humira pens.  And I was so proud of myself for not needing someone to hold my hand while I did the whole thing by myself in my room.  Dad told me that if I ever think I can't fight, I need to remember that moment when I ran out to get high fives from Chris and Dad for doing the injections by myself.  Dad could tell I was so proud of myself, and knew I would eventually need to remember that I'm stronger then I think.  It's nice to have my family in my corner.

One more doctor's visit before the holidays and a few more blood tests I'm sure.  It's funny though.  In my new normal, I'm no longer terrified of needles or blood work.  Instead I'm the girl asking questions on why they take two tubes of blood.  And in my new normal?  I kick ass in giving myself injections.

Doctors, Doctors, Doctors.

Tomorrow is another doctor's appointment where we find out more about the blood clot.  This particular doctor always makes me smile when I see him because he walks in and gives me a kiss on the cheek.  The first time I saw him he asked me why I was there, especially considering my age.  The upside is this time I have never been truly knocked on my ass with Natasha and Boris.  The downside is that I have some weird bruising on the leg that Natasha and Boris are located.  When I asked my boss if that can be a side effect to the Warfarin, she said she didn't see it as one.  But then when I showed her the veins, she laughed and told me my legs look like they are old people veins.

Before anyone takes offense to my boss laughing at me, I started making jokes with her before I pulled up my pant leg to show her my shins/calves.  I have realized that if you start the joking, it takes the sting away from the reality that my veins really do look like an older woman's veins.

Sometime in the near future, I have an appointment with my rockstar stomach doctor.  I'm hoping to start reducing the steroids.  I have to start worrying about my bones when I'm on the steroids for any length of time, and I just want to stop worrying about things.  So I'd like to get this show on the road and stop tappering the medication now.

I also have to make an appointment with a new doctor.  It's the doctor who will hopefully tell me why I get these blood clots.  Or they will tell me if there is something with my blood that makes it clot easier.  But I'm hoping to get some answers when I go see that new doctor.

Another New Start....

Nothing better then giving a mass over view of my doctor's appointment to the general public via this blog.

No. There was absolutely no sarcasm in that statement.  I promise.

Like I said earlier today, I was absolutely terrified to go into this doctor's appointment today.  I knew I was learning how to inject myself with this new medication of mine, which doing anything new is scary.  However, when I looked at the box, I realized I wouldn't be injecting just one "pen" into myself, but rather four.  And the last time I got any sorts of injections/shots (i.e. the devil shots), I was in lots of pain after we injected them. 

To say I was nervous was a huge understatement.

Well, the doctor who taught me how to do it was absolutely amazing.  Seriously, she was super friendly, and answered every question I had thrown at her.  She needed to verify some things about my current medication before we went over the proper way to inject those lovely pens.  But she did answer everything, including the ever important "Will it hurt...."

Now about the actual injection.  It's an interesting feeling to know you will be injecting yourself with medication, that sort of hurts, but not really.  The pens are easy enough to actually do, just hold up some extra skin in my thigh area and hold down the pen for 10 seconds.  Not too bad, the whole holding the skin part is more annoying then anything else. All I could think of for every pen (I did three on my own; the one she administered didn't hurt at all, but mine kinda had a little sting to it...) was that it was a suction cup whenever I hit the actual pump.  Once again, really weird little action, but it's over within 10 seconds and then I just move on to the next pen.

There was a bit of blood, which of course scares me whenever I have any sort of blood, but I got four different band aids (not fun looking ones.....FAIL).  I giggled going home thinking to myself how I would look completely broken if someone knew I had four different band aids all over my legs.  On top of that really hot looking leg bruising or whatever.

Anyway, now I have to actually invest in a planner because I have to keep on top of when I'm injecting these pens.  The next time I have is the beginning of December I believe where I will be using 2 pens, and then every two weeks I will be injecting myself with 1 pen.  So only 10 seconds of uncomfortableness.  YESSSSS!!  So far there isn't really any side effects, but that happened last time too.  I'm hoping that everything is going to go wonderfully with these injections.  The only problem is I have to do some blood work, but luckily I can work this with my blood thinning blood work.  The BIGGEST problem will probably be actually getting the blood outta my veins because that's been a huge fail any time I have gone to blood work. 

But that's the update on my life from today.  Tomorrow is a day to spend on the phone with mail order companies and billing offices.  Wonderful day off huh?  I lead pretty much the most exciting life in the world.  And I wouldn't have it any other way....

Smile Like You Mean It.

Today I'm rather terrified.

I have a doctor's appointment in about forty minutes to learn how to inject myself with my new medications.  I'm 25 years old, am perfectly okay with other people poking me with needles, but the thought of doing it myself?  Makes me want to cry.

So I've been trying to put on a brave face, and not really think about the fact that I have to inject myself with this wonderful little pen needle for the long run.  From what I have read on-line, it hurts like a bitch if you do it in your thigh.  Research on message boards scares and reassures me at the same time because people aren't going to lie about different medications when it comes to colitis talk.

I'm just hoping that this new medication will work. And not be painful.  Because I'm a big baby and just can't deal with being in pain anymore.  

Here We Go Again....

For those who read this on a regular, I have not been opening up recently about my current events.  

Last Wednesday after work I head to Goose Lane, my home away from home.  Now when I say this, I do not want you all to think I truly enjoy going to the hospital.  In fact, I hate it. But I have been dealing with this stupid stomach thing for a week, and when I got home on Wednesday night and called the on call service, they basically told me I should go to the hospital.  So we ended up going, I got pumped up with IV fluids, some Cipro and other drugs, and ended up heading home at 3 in the morning.  I was punch drunk basically at that point and all I wanted to do is go home.

Mind you, the nurse who was checking me in sort of remember me once I started to tell her what I was in for.  She looked at me and goes, "Wait you were here a few months ago....".  Woof.  I don't enjoy being remembered in the emergency room (even if it's not a busy emergency room.....)

Anyway, I ended up trying to go on with life like normal by going into work with my head down and do my work.  I was successful, and looked forward to having three days off so I can sleep off this awful stomach problem and hopefully have the medication kick in.

Sadly, I was mistaken.  

Since Thursday evening, I haven't had a full nights sleep.  I have been up basically every hour or two, and last night couldn't even sleep at all.  My stomach didn't get any better what so ever and I missed out on some fun times with my friends.  Instead of calling the on call service again this weekend, I waited until Monday to call my doctor to see what he would recommend.  I'm not happy.  I'm in my bed or on the couch most of the day and can't even fall asleep when that's all I need.

So yesterday my doctor recommended me going to the hospital either last night or today.  I do not want to go at all and when I told him I wasn't up as much last night, he asked if I started to feel better.  If I answered yes, I don't need to go today, then my parents would have KILLED me.  Now I'm just waiting to hear from Yale until a bed is free and my sick ass can get in there to start getting pumped with medications again so I can start enjoying food again.

Seeing as I'm finally off of the steriods, I am finally seeing the side effects to the Remicade treatments.

Number one?  I feel like I'm breaking out all over the place and that I look really silly with it.  Plus, I'm tired all the time and can't stay awake if I ever lie down for any length of time.  Which is not fun because I do not like being tired.

I'm hoping this goes away ASAP because I'm really over it.  

Recently, Christopher has not stopped asking me questions about the whole colitis thing.  You see, he has a new friend who has Crohn's and doesn't seem to know anyone who has the same thing.  I guess I never realized how lucky I am to have friends who know what I am feeling when I go through a flare up.

But it's really nice to have Chris ask me questions about my health.  Even if it's what medications are you on a Sunday at 10 oclock at night.  When I didn't know what was going on with me, I was so upset with Chris for the fact that he never seemed interested in my well being.  I knew he cared, because he always offered being a phone call away.  But he always went off with his friends on adventures while I was stuck on my bed, depressed.  Asking all the questions he has been asking, and seeing his fascination with knowing the answers through his new friends eyes is pretty amazing.

His interest in my condition makes me want to meet this new friend but more then that, I want to sit down and have an open discussion with my wonderful brother.  Honestly, even a question about stupid medications couldn't wipe the smile off my face.

Blah Blah Blah

I've been in a funk all day thanks to the wonderful doctor's appointment earlier.  

I'm sick of being sick to put it lightly.  I know people who have the same thing as me and are on their own medications and if they stay on it, then they don't get flare ups.  Then there is me.  I take my medication religiously and I still get the flare ups.  Then I have to go back on the steroids which is not good for my bones until we figure out what to do next.

Welp, my doctor laid out the options for me today and as I was sitting there listening to my options, I couldn't help but hold back all my tears.  I just want to be normal again.

So basically the 6mp that I have been on since last summer isn't working.  I have to be on a lower dose then normal because it messed with my liver and so at a lower dosing, and a flare up, he has determined that we need to have another course of action to deal with this colitisis. I get to choose from two things.  Lucky me.

First option is to get an injection of methotraxate every week.  Unfortunately, working in a pharmacy I am privy to things most people would not know, which means I asked the doctor if the tablets are the equivalent to the vials because the injection has been on a back order for as long as I can remember.  He said it's not the same thing and he would want me to do the injection.  Which means this option is not an option at this time because if I can't get the drug, then I can't inject it into me to feel better.

Option 2 is an IV treatment.  I forget what the medication is called but basically I would go down to his office for a 3 to 4 hours IV treatment.  To begin, I would need to get the treatment every 2 weeks but then I would be able to go every 8 weeks.  With this treatment though, I have to go to the doctor's office, but it means that I won't have to take all my pills.

Now some people may say "Jen, it's a no brainer.  Do the IV treatment if it means getting better.  Plus not more pills."  And while that is definitely a plus, I don't want to have to take a chunk of my day to just sit around while this IV drips into me.  It makes me think I'm getting a cancer treatment.  Which from my research on both of the drugs this afternoon, they are used to treat cancer first and foremost. I shouldn't be sitting here having a pity party on the fact I have to take some medication that treats cancer when I don't have it but I'm sorry, it's been a tough day to basically be told you have to do IV treatment.  

When I get a real job, how do I explain having to take a half day or a day off every 8 weeks to sit in a room and get an IV drip.  Is the IV going to have to only go in my hand because the veins in my elbow aren't strong enough to deal with any more pokes.  Will I have to do this for the rest of my life?  Will it actually work? 

This doctor has not let me down yet, but I was hoping that this 6mp would have worked for me for the rest of my life.  I don't want to do the IV or injection.  I much rather take pills.  If you had asked me in high school if I imagined myself crying about medications to treat a stomach problem, I would have said no.  I just want to be better.....

Dr. I....It's Almost Our Year Anniversary

After the first visit hesitation, I have looked forward to my visits with Dr. I immensely.  He is such a genuine guy, never making me feel as if I am one of his many patients.  I always feel like I am number one when it comes to him.  I think part of the reason why I feel like that is because he came to visit every day when I was in the hospital.  The new pharmacist asked if that was due to the fact that he had to, but I said absolutely not, he came to ease my mind.  At least that's how I saw it.

Why am I talking so much about Dr. I you may ask?  It's because I had an appointment with him yesterday.

Yesterday was the first doctor's appointment I had in months.  Seriously, I had not had to step in a doctor's office since May/June and I could not be happier about the fact that it is months between appointments for me.  I guess Irene is thanks to that, but I still feel like it's a huge relief that I don't have to see a doctor every month like I had been.

Anyway, we discussed my progress per usual, but we also discussed taking me down my steroids once again.  Now we are going below the dosage I was on before going to the hospital which is exciting because I have no had any flair indications at all.  So small victory on that part.  He did say that when I see him next, which is in a few months, I should be off the steroids!!! This will be around the year anniversary of these whole shenanigans starting so I could not be happier with the idea that another one of my medications will be discontinued when the year anniversary occurs.


Anyway, I also learned my weight with this appointment and while it's completely fine with my height, I'm still not fully okay with it and will begin running on Monday to become more in shape.  Please don't roll your eyes.  Being in shape and being skinny are two completely different things and I need to start running in order to not only sort things out in my life in my head, but also to feel better about myself.


Dr. I and I also discussed what happens during flare ups.  Those damn things scare the hell out of me if I'm going to be completely honest.  Last flare up I ended up in the hospital, and a friend was recently hospitalized when she experienced a flare up.  I just do not want to end up in the hospital again.  That was not a fun experience at all.  He told me how a flare up would work in my situation and if I am understanding him correctly, it shouldn't occur if I stay on top of my medicine.  This is not to say that the medicine will eventually stop working.  I had to take blood work immediately following the appointment to check various levels, one being my liver level.  He said that it had been slightly elevated which was not caused for concern but he wanted to keep an eye on it which is why he asked for the blood work right after the appointment.


If I'm going to be completely honest here, I'm completely terrified.  I'm terrified that I will end up in the hospital again for a week, or even longer, without many people who will want to visit me.  I'm afraid I am going to eventually have to give up my favorite food because it causes a flare up.  I'm afraid that at the age of 24 I am already taking 10 different pills if I don't count the steroids which I will be off of hopefully by the end of the year.  And I'm afraid that this stupid disease is going to control my whole life.  I have had to worry about my pills whenever I go anywhere.  I have had to worry about the nearest bathroom and stomach pains whenever I go out.  I'm not a fan.  How do you explain this thing to someone who has no experience with it.  Luckily I have friends who also have it so our group has become understanding about it, but still.  How do I even begin to explain this to people who come into my life in the future?  This damn thing has been a pain for close to a year now, and I have tried to hide my worries from everyone.  But what I would not give to be normal again.  With a normal stomach that I no longer have to worry about medicine, and blood and enzyme levels.

Yesterday, the medication FINALLY got cleared with insurance and I was finally able to start taking it.  Last night we dropped in to pick it up, and I started to read the information on the bottle and the label.  

And boy, did that scare me.

First off it said I would not be able to drink alcohol, which Dr. I told me was not the case when I first started to talk about this medication.  He said I would be able to have drinks especially after I told him I planned on having a huge celebration when I got back from Washington.

But one of the side effects is losing your hair.  UMMMM, seriously I don't want to lose my hair.  No thank you.  One of the first sentences is something about how the drug is used for cancer. And how I have to wash my hands after touching the freaking pills.  But I guess if it's going to make me better, with no flair ups, then I can't complain.

Gotta Keep Your Head Up

One week ago, I was just getting checked into Yale hospital in New Haven after being at Goose Lane for hours.  Today? I had the pleasure of waking up in my own bed, without any pain or hurt that I had been experiencing last weekend.  Nice change huh?

It's funny, I have been waking up around 6ish every morning and I think the reason for that is because I'm used to getting woken up to do vitals slash blood work that my body is used to it now.  Not the best thing to get used to but, I'll take it as long as I can fall asleep again.  Which has not been happening but still, I'm home and don't need to get the blood drawing at the crack of dawn.

Today I do have the pleasure to get my blood drawn to check my INR levels.  The slight problem with that is I have not been getting the belly shots that I think jump starts my INR levels, so I know they are going to be all out of whack.  I'm also taking a very high level of steroids which I realized last night when I was trying to go to bed that is an additional factor to my INR level probably being low.  For some reason I'm not so worried about my INR levels because they told me last week that the blood clot was really gone and that I just had thickness on the walls of my veins.  

Today I get to go back to work and I could not be more excited.  Crazy, right?  I am pumped to go back to the busiest day of the week and I have no reservations about it.  I just want to go back to normal and spending a week in the hospital made me feel the farthest from normal I have in a long while.  But tonight I get to work with my friends.  So excited.

I'm going to post some of the pictures I took last week; one of my ET finger and the other of the building I was in/the view of the second room.  I know I have been saying this for a while, but I am actually doing it today before I go into work.  

Once again thanks for every kind thought and prayer everyone has sent this way.  Love you all

They are Doing Rounds Right Outside Now

Sleeping at a hospital while unusual, isn't as bad as I thought.  I just don't like the idea of not getting up to go to the bathroom if necessary but I dealt with that on my crutches as well.

The crazy lady across the hall was at it again last night and I heard the nurses telling her she is not the only patient they have.  Whenever I did wake up, it seemed like someone was in there with her.

I got woken up twice I think for blood work and what not.  It wasn't too bad, they were able to find the vein easier then they had earlier in the day.  But like I said, it would be difficult to go back to sleep again but then I would manage.  Same with earlier today at like five and eight.  Although at eight I decided I would stay up just because I didn't fell like having to deal with trying to sleep again.

Still unable to eat today which makes me even more hungry.  Wonderful for the girl who loves food. Blood levels are good though and they are hoping to unhook me from things so I can actually move around a bit.  They are also saying that I may be moving to the regular floor which may mean roommates, wonderful....I can deal.  I'm also crossing my fingers that Dr. I will give me the go ahead to eat today.


I didn't mention in yesterday's post but Dr. I did come visit me yesterday.  It was good to see him even if the circumstances aren't ideal.  He told me what he did on Friday when I talked to him on the phone which basically means I will be needing to get new medicines.


Don't worry kids, I will continue to update you guys.  Especially at night when I'm bored here by myself.  Oh and can we talk about the fact there is NO FOX which means NO GLEE tonight.  And no MTV but no Glee?  That simply blows.

The New Normal

Dad told me the other day I have to start getting used to the new normal. 

With the start of spring upon us, I have to begin to become comfortable with my new normal.  This means regular doctor's visits and blood work to be done.  This means having my doctors programed into my phone.  I am pretty sure I am the only one amongst my friends who has doctors programed into their cell phones.

This means having my medication in a weekly pill dispenser.  New normal means having to double check every time I leave the house that I have my medicines, especially my blood thinners around dinner time.

It means standing in the kitchen beginning to cry when you accidently cut your finger when cutting rolls for dinner.  This just occurred.  I tried to keep my tears in and let Mom and Dad get food while I stood there with a napkin wrapped around my finger.  Don't worry kids, the cut was similar to a paper cut, but it was still heart stopping.

My new normal is not something I'm happy to try to become comfortable with.  But I guess being uncomfortable is the reason why I have a new normal.  I just hope that eventually I don't have to take so many pills, or have to worry about getting cuts.

PS GO UCONN

Weather, You are SUCH a Tease

Today was my appointment with Dr. I but there really is not much to report back.  He wants to slowly get me off the steroids which means this week I'm decreasing it once again so I will only have to take two pills of the steroids during the day.  However, I will have to double one of them which means I really did not get to decrease my pill count at all.  I mean I guess it's fine, but I was really hoping I would not have to take so many pills.

I'm also going to be starting some vitamins, on top of the gummie ones I'm already taking.  Let me tell you, I have to have the vitamins that taste good, and these gummie ones make me think I'm eating candy.  I always want to go back for more.  I mean, how old am I, 24 or 4?  I can't decide.

On top of my usual blood work this week, I have to get some more for Dr. I.  He said this may determine if I have Crohn's or Colotis.  While it's not a definite answer, something about the results could make what people with these tend to have.  Who knows, all I know is it will mean more vials.

Side rant: Why does it seem like every body is surprised by my weekly blood work?  I thought this is what people with blood clots get the enjoyment of doing?


Also, I want to say this weather is the biggest tease.  I missed out on the sweet weather on Friday because of work, and now on my day off it's snowing/raining.  Fail.  Bring on spring/summer please

Been Up Since 4:30

After many requests to what is going on in my life, I have decided to be productive this morning by making a wonderful little post for those people that still check this thing on a regular basis.  I promise I will post again later this afternoon because I have a few ideas of posts, especially things I need to vent about, but for now it's just something to do because I have been up since 4:30 and I can not fall asleep for a few more hours before work.  I already win for the most epic day of the week.

Last week I went in for a CT scan and I'm not sure if I had posted anything about that.  I think I did a blog right after, but nothing about the results.  My doctor told us the change from the first to the second really did not happen, the swelling was still the same.  I was under the impression that this scan was going to tell us a little more but it didn't.  However, it did allow the doctor to give us some options on treatment.  The first option was to continue just the pills that has taken away the pain in my stomach, which would not treat it exactly but would keep the pain away.  After a month if nothing changed, then I would have been prescribed steroids which the doctor felt would actually treat and hopefully reduce the swelling and make everything better.  He also gave us the option to take the steroids now, which is what we chose because we want this to be treated as soon as possible.  I mean a month and a half is a long time to have to deal with this.  It's going to be almost two months of the whole stomach thing in about less then 10 days.  Crazy to believe huh?

I have been on steroids since Monday.  In addition to the steroids, I take the stomach pain medicine and my blood thinners for my blood clot.  Basically I am taking a ton of medication in hopes that everything gets better.

Unfortunately I can not say that my spirits are always so high.  I seem to always break down on Sunday nights, crying to my dad about either embarrassments from the weekend, no change in my health or just being overtired or whatever, but I have been crying every Sunday for the past few weeks now.  It's not to say that I have not been enjoying my life, because I had a very enjoyable night out with Meggie and Amy on Saturday to celebrate my dear dear Amy.  But I'm just over not feeling one hundred percent and I seem to get that fed up point on Sunday nights.

I have been working a lot which I love because it keeps me from worrying about my insides, and seemingly doing better throughout the day.  However, it is not doing well for my leg at all.  I have been working later shifts, which means the swelling in my leg which was anticipated is happening.  But because I'm working later shifts, I don't have as much time at night to elevate the leg and in the morning I can't elevate it because I have to get ready for work.  Thank goodness that tomorrow I only have to work five hours after a busy day of blood work and a doctor appointment.  Then I have two days off to make sure that my leg is able to recover a bit, or at least I hope to not do a whole lot with it but rest it.

It's seven o'clock and I'm sitting listening to the radio, after seeing a lovely coyote in the backyard.  If the coyote messes with my dogs though, it's going down.  I already warned it through the window.

I'm expecting to crash by two.  I'm also hoping to get out a little early.  One could wish for some luck change soon.

Funfetti....Trying to Make the Day a Little Better

This weekend I realized that when I don't take the medicine for my insides at regular intervals, then I'm in pain. Case in point, Saturday night when I was out, I was in pain when we left because I had waited like six hours before I took my other pill. Smooth Jen but like I told my dad, it's trail and error with this medicine and figuring out the proper time to take them so I never have to be in pain.  I can't help but concern myself with the fact that there is aspirin in the pill which I'm not supposed to take with the blood clot.  The blood work on Thursday will hopefully inform me if I have any reason to worry.

Dad told me that I need to stop worrying because he thinks that it causes my insides to flair up.  I'm sure that is part of the case, but I just want medicine to fix it all.  This morning I woke up at six to extremely itchy hands. Yes, this seems like a weird thing, and yes, it's probably nothing.  But it seemed to last forever and it was so annoying that I told my dad who gave me some anti-itch lotion.  Unfortunately, this did nothing for my hands which continued to itch. Luckily I was able to fall back asleep and woke up to get ready for my CT Scan! Aren't I a lucky girl?

The CT scan was a whole lot of waiting around drinking even more disgusting drink then the last time.  They told me I had to finish three types of tubes but I was unable to, only 2 and a half.  It was a struggle to drink because it tasted so disgusting.  Plus my insides started to hurt, a lot, right before I was summoned for my scan.  In the waiting room, of course I cried because of the pain in my side.  The lack of medicine throughout the day because of my fast before of the test put me in more pain then I was comfortable with.  And now, for the rest of the day I have been uncomfortable and on and off with the pain.  Wonderful, the scan is supposed to tell me what's wrong with me and yet it put me in an uncomfortable position for the rest of the day, unable to enjoy any of the food I have eaten.

The actual scan wasn't too bad.  The IV with the warm sensations sucked and the tape they put over the gauze hurts to take off.  But that's a pretty standard issue that most people have to deal with.  The part about taking bandaids off hurting, not the warm sensation from the IV because I do not want anyone reading this to have to deal with that.  The lady told me that the scan should be ready for the doctor to deal with tomorrow so I'm crossing my fingers that when I come home from work tomorrow we have a different plan of action on how to fix me.

So here I am sitting in my room eating my funfetti cake trying to look on the bright side of everything.  Funfetti pretty much makes that possible though.  I'm also crossing my fingers that tonight I'm not up every hour, or that I wake up with my hands itching like crazy.  I hope that my leg doesn't swell up on me after being at work for hours and hours tomorrow and that I don't push myself too much, or have my boss hate all the breaks I may have to take if my stomach stays like this. (Thanks so much for that contrast because I've come to terms that it's your fault.)  Mom is taking my wheelchair back to work so we have some sort of progress I suppose but I will miss that wheelchair, even if I have barely used it the past few weeks.

Small steps towards recovery, I suppose? Next up, my insides. :)

Boooo to Pain

Today, I uttered the words I never thought I would ever say in my life.  I told my dad I was afraid of eating.

Now for those who know me....I have never said those words in my entire life. My love for food is bigger then most people's love for it.  I could probably win an eating contest versus most of my friends.  I look at menus because I go to restaurants to see what different options I have for my meal.  I even look at menus for places I have never been to or plan on going to because my friends mention it.  I'm a food fanatic.

The past month though I have not been able to enjoy my love of food like I want to.  This week I have been trying to have a "bland" diet of things that would not upset my stomach.  Although that has not helped my symptoms at all.  I get a terrible pain in my side a few minutes after I eat which sometimes brings tears to my eyes.  I just don't get why I have not gotten better or why the doctor didn't think to give me medicine after that first visit to try to treat the problem even if we don't really know what the problem is.  Now, he's beginning to do that, but I'm nervous about taking the medicine and it not working.

To be positive though, they will find what exactly is wrong with me and give me medicines to fix me.  He says he is pretty sure what it is, colitis.  Fabulous.  But I'm not really worried about that because Brendan has it, and I watch him on a regular basis eat things like Buffalo wings.  If having colitis means I can't have any more alcohol, I mean that will suck, but I will deal with it.  As long as I get my food back soon, that's all I'm truly concerned with.

I do not want to be afraid of food anymore.

And once again I have to laugh about how most of my posts seem to be about food.  It reminds me of the Woodmont family and how food makes our world go round.

Off to watch the ever exciting Syracuse and Uconn game. Let's go Huskies