2013, You've Been a Treat....

I'm going to let you in on a small secret.

I have had the pleasure of 2013 welcoming me in with a wonderful little flare up that has gotten worse instead of getting better.  It all began mid-January.  I started to not feel well and I got in touch with my doctor as soon as this started. We increased the steroids, and tried to come up with a plan because instead of getting better, the flare up was getting worse.

Flash forward to last week.  Basically I was miserable.  I would go into work, come home and try to eat the best that I could, and then go to sleep because I was completely exhausted.  I have basically gone into hiding because I don't feel well.

I had another test done last Wednesday and was told that the inflammation hasn't gone down at all, which confused my doctor because I'm on a bunch of medications and shouldn't be so inflammed.  So he upped the steroids and said I would be hearing from another doctor who will hopefully be able to figure out what's my problem.  Mind you, I am piecing this conversation together because the good doctor thought it was a great idea to have this conversation when I was coming out of my drugged up state.  Wonderful.

This past Friday, I talked to my doctor a little more.  I guess my whole situation has him thinking about why I'm going through this and what the game plan should be.  This is where it gets a bit scary and where I'm not such a strong little girl.

He said that I've gone through most of the medications that people who have colitis use.  Either I can try some new medications that this other doctor will suggest, or I can try my shots every week now.  I have wanted to try the shots every week now, but I need to actually get approved for the prescription through the insurance company.  Wonderful.  But he also mentioned surgery and removing my colon.  That made me have a minor breakdown in the middle of the living room.

No surgery for this girl in the forseeable future.

Dad said that surgery will be my last option, but he has begun doing his own research on how to make me feel better.  I think I'm going to start a different diet to hopefully curb these flare ups.  I need to research some more about the diet before I make an official decision but I'm almost 99% sure I will be changing up my diet.

This is what has been happening to me these past few weeks.  I am trying to be as stress free as I can because I know that's not good for my colitis.  I have also been trying to avoid certain foods that will make me hurt.  I've been having a good few days though, knock on wood. 
 

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.

Always Winning....

Blood work.....such a fun filled little experience.

As the doctors are trying to find a happy medium with my medication and blood levels, I get to become a human pin cushion with my hands taking quite the beating every few days.

After the hospital, I was left with multiple bruises on my hands because that is the only place they can take blood or put in the IV lines.  Unfortunately for me, my veins absolutely suck and I have several bruises covering my wrist and hands to a point where I was making jokes with the nurses that some may think I got in a fight and/or was a junkie.  To which neither story is true, but that's something I would hope the people reading this would know.

Yesterday, I went to get more blood drawn and the guy had to try both of my hands because the first attempt didn't produce any results. Lucky me right? Instead, I had a very interesting discussion with the blood draw guy for ways to make the whole giving blood samples easier for me.  I don't know if it's actually going to work.....I have terrible veins thanks to Mom, but I am willing to try anything because I have so few options for them to work with.

You know it's bad when the people at the blood drawing place knows your face and knows that you can't get blood drawn from the veins in your elbows (not really your elbows but still.....).

 

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.

Seven Months Later....

There is a sense of irony that I would finish my Warfarin about seven months after I was rushed to the hospital for not being able to walk, and subsequently discovering I had a blood clot which I later named Henry.

Today marks the day I had been wishing for since starting my Warfarin.  The last day I have to take it.  Today is the last day I am able to take a full dosage and thus means I am done after today's 15 mg dose.  

To say I am relieved is the understatement of the year.

I have had to deal with Henry now for seven months.  Those are seven very long months.  From crawling on my ass to get to the bathroom before we knew what it was, to graduating to crawling down the stairs when I needed to go to doctor's appointments, trying to laugh as I rang in the new year in a wheel chair, returning to work, having to deal with swelling if I was on it for too long, the countless ultra sounds and blood works, to the moment when I was told Henry was gone, and the time I would eventually go a day without thinking about the blood clot.  It's been a long journey for my family, friends and I.

While the journey continues with us discovering why I got Henry in the first place, today marks the first day of the new year that I can say I'm officially off one of my medicines that I started that day in December.  To not have to worry about taking those 2.5-3 tablets every night is going to be a serious highlight of July.

I wish I could say I'm done with blood work, but that's not even close with the other medicines I'm taking.  Small steps though right?

I really do want to thank everyone who has helped me throughout this journey of mine, especially when I was down and your kind words brought me back up.  I don't know what I would have done without my mom, dad and Chris, who were a constant support from those first few hours.  Mom, I still remember laughing to the point of tears when I had to scoot to the bathroom, before we knew the severity of the whole situation.  Your tears may have been from laughter, mine was a combination of laughter and pain now that I think about it.

Don't worry folks, I promise to keep updating this thing.  It's a form of escape for me, and while I have been failing at updating recently, I have some things I need to work out in forms of entries in here.  Even if nobody else reads this, at least I have something to show about this journey with Henry and the colitis.  Goodness, I sound like a 90 year old and not someone who is 24 years old.

Hey Hey Hey Goodbye

As many of you know from either my facebook or an email from my mom, HENRY IS DISAPPEARING!!!

The doctor told me yesterday that the blood clot has gotten much smaller and it's almost gone.  He wants me to continue with the Warfarin until after my trip to Washington in July.  Originally he said I could be done with it in June, but when I mentioned the trip he said stay on it till after I got home.  He said I didn't need to do blood work every week anymore but every two weeks.

And he also told me to just live my life.  At this point in the appointment I started to cry.  Huge surprise right?  He told me to let it out and stressed the fact that I needed to live my life and not worry about Henry anymore, that stressing is not going to help anything.

I did tell him how difficult it was to deal with Dr. P telling me every week that my INR levels continue to decline and that it was somehow my fault.  He proceeded to tell me that I do not need to worry about my INR levels, that they change throughout the day and that if it was between 1.5 and 2.5 then it was fine.

What's the most frustrating thing about the whole thing is getting two different stories from the different doctors.  But I'm going to trust the experts.  And that means I don't have to worry about Henry anymore, and I can even enjoy a glass of wine (his words not mine).

I cried once again outside and my dad told me I have to start to trust some doctors.  I think he understands why I don't because it's been different stories for four months, but after four months I finally am told good news.  That the freaking clot is almost gone!  And it's finally sinking in that four months to the day I have finally reached the point I never thought I was going to.

So July be expecting a fiesta of epic proportions to celebrate, if that's okay with the parentals.  But I need some celebrating the fact that Henry is GONEEE.  And sorry to say this Henry, but I won't really miss you.

Crossing Fingers and Toes

Today marks another ultrasound for this little girl.  I'm especially nervous about this one.  Not because I don't know what to expect, because I do, but because Henry has been acting a bit strange the past week and a half and I am hoping to get some answers today.

My leg has started to get a little bigger than it has been.  My leg could be swollen because I really have not been resting it or elevating it when I get home.  But it's not just that it's swollen.  There almost seems to be a pulse in my leg where I can almost feel the blood going through.  Or maybe that's not the right explanation.  There are small waves of uncomfortableness, or pain that goes through sometimes that I don't quite know why it's doing that. 

So today we find out what is going on.  I find out if I'm stopping the blood thinners.  I find out what the next step is.  I find out if my bike riding has caused more harm then good.  I find out if Henry has grown or shrunk.  My hope is for the latter. And after an emotional draining doctor's visit, I get to go into work and work with people that will be able to cheer me up.  Nice to look forward to you know?

Sitting Waiting Wishing

This title is relevant in two completely different ways.  Remember how I said Fridays were similar to American Idol result shows with my INR levels?  Well Dr. P has been failing at giving me said results.  This is the second week in a row that I'm sitting on a Sunday night not knowing what the results from WEDNESDAY were.  Seriously, I understand I got the blood drawn late on Wednesday, but I should know by now.

And watch her give attitude when giving my INR levels like last time because they went low again last week, as if I should know why it isn't staying consistent.  Plus I should be giving her a bit of an attitude for not being more prompt with my results.

I'm seriously over doctors.

The SECOND thing I'm waiting for is tomorrow night at this time.  Which means I'm outta work and waiting for the UConn game to begin.

Last night I watched UConn beat Kentucky to get into the championship game tomorrow evening.  The game was not pretty by any means, I was made fun of by my friends for taking it so seriously.  In the final moments I was so nervous I turned my back for a few seconds so I didn't have to watch.  But we won!! And I love this picture of Kemba; it's rejoicing after a hard fought battle (or just a difficult game because it really wasn't that great of a Final Four game) to come out on the road to the championship game.

And Butler's coach? Completely reminds me of a my boss.  I asked him today if he gets that a lot.  He kinda laughed and said he's heard it a few times.

So here I am waiting for results.  One that directly affects my health, body and well being, and the other that doesn't necessarily affect my health, but my well being and happiness? One could say that is possibly.

I think I'm okay with people thinking I'm weird about my love for the Huskies