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. 
 

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....

Happy Monday Ya'll

Gotta love a doctor offices.

We got there probably 10 minutes early, not for any particular reason just to make sure we were on time.  The office was a little crowded, but it's a Monday morning so it's to be expected.

As the room continued to crowd with new arrivals, I started to get nervous that there wasn't going to be enough chairs, and if that became the case, I would have probably offered up my chair.

Anyway, they began calling people in for their appointments.  Bam. Bam. Bam. Names were being thrown left and right.  Eventually, my name was called, and I went in to see the doctor, who I think just really loves life.  He really seems to embrace everything good with life.

Anyway, the actual time I saw the doctor didn't last long.  To say it was 10 minutes long would be pushing it.  He asked me how the pain level was, asked what type of medication I was on.  He asked if I saw the blood doctor yet, then told me he couldn't really do anything until the blood doctor does his tests.  Thank you so much for wasting my Monday morning with an appointment I didn't even need.

I did ask about my freakish bruising.  He said bruises do occur and I shouldn't be alarmed when I see bruises on myself.  He said as long as the bruises seem to be going down, then that's a good thing.  Personally, I think it's a good thing that my bruises/discoloration seems to be disappearing.  But that's just me.

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....

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.....).

 

I'm Ready...

It's been a week since my first Remicade treatment and I feel no change.  I was not looking for this to be the miracle drug.  I was not looking for a drastic change, but I was hoping that I was feel a little different.

When I walked into the room last week, it was set up with a bunch of Lazy-boys and poles to hook up the IV's.  There were already two people in there and the girl who runs the whole thing went over everything to expect with me.  She was probably around my age, and really nice. And she hooked me up to the tubes and I sat there bored out of my mind for two and a half hours with Mom.

Every few minutes they would come over and change the speed of the medication coming in.  At one point a doctor came in to hear my heart and stuff like that and asked if I was okay.  He was an oddball but it's all good. I was hoping to actually get some face time with my doctor but he was in the other office.  Maybe next week when I go he'll be there.

I don't know when I will get off my medications.  I don't know if I'll ever get over the feeling of going to chemo when I go into that room.  I don't know if I will ever want to go there alone or if I will want to drag people to go with me.  And I honestly don't know how I will be able to pass the two hours with doing something productive.

But I gotta figure I'm not the first person to get this medication and it's going to make me better.  So bring it on Remicade treatments.  I'm ready for you.

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.....

Cause You Never Had it So Good

I realized something as I was getting ready for work today....

It's almost a year since I was rushed to the hospital and got to spend a week with the lovely staff at Yale Hospital.

Now some may be wondering why I remember that wonderful anniversary, or even care.  But it is an extremely important milestone in my life.  I was not in a good place then, and I've grown leaps and bounds.

And I have to say, with the year anniversary approaching, I could not be happier to where I am, and look forward to all the growing up I still get to do.

Miss Me?

The coyote came to visit again last week.  Just staying two days once again and then disappearing into the wild.  Tom's dad said it's not a good thing to have them out during the day, so I will be on constant vigilance to make sure that sucker doesn't come back.  Mandy tried to protect that family by going after it, luckily I saw that in the window and with some fast relfexes to drop my cheese, I was able to get Mandy safely inside.  This is a complete different scenario then last time when I had to hobble to Mom and Dad's window to get a glimpse outside because that window was the closest one to me.

I have been trying to get in the running habit again.  Today was day 1.  Figure Monday would be a good time to start.  And even though it's been over a year, I'm going to try to stick with it.  I can not become lazy again.

Medically, nothing really has changed.  I got blood work last week, and my girl Helen remembered me.  Sad, when that happens.  While waiting in the sitting room, there was this adorable older lady who was trying to unzip her jacket, but she just couldn't do it.  I wanted to ask so bad if she needed help, but when I asked, she didn't hear me.  Then I realized she probably would not have wanted my help and wanted to do it by herself, so it was a good thing I didn't just repeat myself louder.

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.

One Moment Please.....Five Minutes Later

I love when doctor offices put you on hold forever, and then never click back over.

That's what happened this morning.  It really grinds my nerves when I call Dr. P to get my INR levels and ask about the stomach shots and not hear back from her.

"One moment please....."

She wonders why I don't like calling to check my levels and a good chunk of it is because I get the run around with that office.

On another note, I am currently eating part of my care package from Bill and Colleen.  Some very yummy mac and cheese.  And I finally took them all out of the box guys and I was PUMPED for the Cars shape.  Seriously, the shapes are my favorite.

Adele Makes Me Smile

Sleeping in a hospital absolutely blows.  First the lights in the hall stay on all the time.  Second, at least in my case, the beeping of the heart machine goes off every once and a while.  I was told it may go off because the buttons are loose but still, that blows when you look at the machine and see one of the numbers is zero.  Makes for a fun night.  Then, last night I had the lights of New Haven to look at because I forgot to ask for the shade to be pulled.  And if you get to sleep with all those lights and noises, you get woken up to get blood drawn.  It's a fabulous thing.

Last night/this morning when blood was drawn, I ended up channel suffering and found the Uconn vs. Pitt Big East tourney game which I was not able to watch the first go around.  Even though I knew the end result, I still got nervous.  I'm such a nerd.

Another reason I'm a huge nerd. I found the Food Network.  Happiness could not be greater when I turned it on last night to cupcake wars.

So last night I was not transferred like they said could happen in the night.  I'm very grateful for that because it would be hard to get comfortable in a new room in the middle of the night without any family/friends around to try to calm me down.

I'm crossing my fingers and toes that I can leave today.  The changes in the past twelve hours with my care have changed a lot so I'm hoping they are getting ready to set me free.  This morning I was woken up to take some medication in pill form instead of the liquid which I had been getting.  So I had TWO graham crackers with my medication because I have not been having food. HUGE doings people, huge doings.

I also ordered for my breakfast more Italian ice and iced tea.  I'm a semi happy camper.

Hmmmm.  There are tons of more stuff I feel like but I don't want to bore people with the mundane things from my morning so far.  One thing I have to say is that when the residents were doing their rounds, they closed the door so I didn't hear anything they were saying which made me happy because I was really pissed off yesterday morning.  I was going to say to them this morning they are more then welcome to come in to get my opinion if I heard them this morning.  Luckily that did not happen.

Okay so I'm alone until the parentals come which means I'll probably get bored and ramble on here.  Plus I want to show a picture of my ET finger....it glows red. :)

Signing Off For the Day

Today has been day and night in regards to my health but I am still in the same room and still have no idea when I get to leave.

Today and yesterday I have had more visitors then a girl could ask for.  Today though a handful of the people visiting were not a huge fans of hospitals.  Tommy for one told me he hates them and he surprised me by appearing at my doorway with Maryellen.  Aunt Barb and Uncle Mike listened to me ramble last night for a while.  Stacey and her mom surprised me when they showed up, including a little spill because we all get a little excited when we talk.  Aunt Debbie stopped in tonight a little before my girls came to visit.  I was most proud of Shannon and Meggie; Meggie because she's also not good with needles, and Shannon because she does not have a good history with hospitals.  And my Amy had the giggles which made me smile a lot.

When Daddy came in, he stopped in the doorway, amazed how well I looked.  Supposedly yesterday I blended in with the sheets.  Never a good thing.  So a HUGE plus that I actually have color today.

Dr. I came in today to check in on me, and he was highly surprised how better I am.  He said he was expecting me still needing to go to the bathroom a lot, which I really haven't been needing only because I have been drinking so much fluids.  But he seemed pleasantly surprised with my recovery.  And I kind of made him smile when I told him how pumped I was about the fact I was able to have food, even if it's just clear liquid.  It would be nice tomorrow to be able to have ice cream but I'll take what I can.  Because to be honest I want a juicy cheeseburger but that's in my future becauseeeee..... 

We decided to get the procedure to finally figure out what is wrong with me on Thursday.  Even though it terrifies me, we figure it's what is best for me, and to avoid having another one of these tragic episodes where I terrify everyone around me.  So I get to have the joys of a procedure that most people don't get until they are in their 50s.  Might as well throw it all in the mix this time around.

Thank you from the bottom of my heart for all the people who have text messaged, called, facebooked, visited, etc.  I don't think I can say how much that is making me want to get on my feet faster, to be able to play with you guys and not have to scare my love ones.  And yesterday/today was the highest amount of page views I think I have ever had on this blog, so I really do appreciate it.

Tomorrow I will probably make more posts then normal because I'm going to be bored.  Although I may be reporting from a completely different room because even though I was supposed to be transferred to the regular floor today/tonight, I'm still in the step down unit.  And if you plan on visiting, don't fret if you see intensive care.... I'm just in the step below that. :)

Rant.

Thank you doctors outside my room.  Seriously.

While I understand you are now two days familiar with my case, it really brings me a confidence to hear the hospital doctors questioning the decisions about my doctors for the past five months. 

There is a reason why Dr. I has not said he was going to do a colonoscopy right at this moment; because he needs to talk to Dr. C (I think).  There is a reason why we are being cautious, especially because it makes me nervous and I want to eat.

I'm glad to hear you guys question it a bunch and giggle at not understanding his call.

Smiling But We're Close to Tears

The past few days have sucked.  To put it mildly.  I'm sorry I can't put it in better words but I am brutally honest and that's the hard truth.

Yesterday I found out that once again my INR levels are dropping.  I feel like it's the stock market, and nothing I do can stop these stupid INR levels to drop.  I'm at the highest level of my Warfarin ever and yet the stupid blood work is not giving me the results I need.

Dr. P wants me to see the Dr. C to determine when I can get off the Warfarin because I have "been on it for four months".  I informed her that I was going next Monday and she said that should be fine to wait.  I told her that my leg has become somewhat hard which it had not been and that it has been hurting. She told me waiting Monday should be okay.

I cried after getting off the phone with Dr. P.  I cried (almost) at Pop's.  I cried when I came home from work.  Basically I have been in the worst mood ever, that even shopping didn't turn, and have been a hot mess ever since Saturday.  Or at least that's when I have come to terms this whole funk has occurred. 


It's become very difficult to be positive when nothing is going right.  I am basically following everything they tell me to do and yet I get opposite results.  The weeks that I was at the INR therapeutic levels?  I had had a beer the night I would go out AND had a huge salad.  Now I'm not doing either and it just keeps crashing.  I'm just waiting for the whole thing to burn and for me to once again not be able to move because they can't figure this thing out.  That's the point I have gotten to now.  I'm expecting that I will never be fixed.


I was talking to the pharmacist at work last night about Warfarin.  She told me that people normally go on 5 mg and become therapeutic and it's rare for a person to go to 10.  To go over 10 mg is nearly unheard of.  Well guess who is over ten? This girl.  She laughed and said you would think I was a 300 pound man or something with the levels that I am already on.


Maybe I really do need to see and talk to someone because right now I don't want to be around people where I have to pretend that everything is wonderful but at the same time I want to be around people.  The time I almost forget about everything is when I'm at work and super busy that I don't have to think about it.  That and the fact that there are always so many people around that it just makes my mind go blank.  It's great.  But maybe I really do need someone to sort out everything up there.  I just don't know anymore.


Up next:  Monday I get the dreaded ultrasound.  Which will tell me if this thing has grown or not.  I almost feel like it has because it's becoming more obvious that it's there but who knows.

April Fools....Days Later

Today, I ended up crying in the middle of my kitchen after getting off the phone with Dr. P.

I'm just very tired of having to deal with all this crap.  She says my INR level is continuing to get lower and asked me what I have changed in my life that would cause this to be happening.  I explained to her that I have been decreasing my steroids while increasing the other medicine so maybe that's what happened.  She didn't seem convinced.  But I really don't know why I have so much faith in what she says because she has not been on the top of her game.


When I originally called the office, they didn't seem to have any idea where the results were.  That's smooth guys, I had the thing done on Wednesday.  Then, I was told by Dr. P. that I had to call the office within 24 hours if I didn't hear from them after my blood work.  Funny, I thought I was going to get sick of her and now she isn't keeping up with her end of the bargin.


I'm tired of feeling like I can't get anything right and that it is somehow my fault.  I guess I will try to cut chocolate, salads and caffeine out of my diet completely (that's another promise that's broken Dr. P).  Today is the first time in a couple weeks that I have broken down to tears, it's not a fun time.  Especially on such a fun/good day!


UConn game after work tonight which means this is going to be the longest day in the history of work days.  And it's a short shift too, which means it probably should go fast.  But the UConn game is on tonight!!! CHAMPIONSHIP GAME.  Ugh I can not contain myself.

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

Ohhhh Henry

Tomorrow is a doctors appointment. Dun dun dun.

Actually not really, because I'm going to see Dr. I (I think that's the nickname) and contrary to my first impression of him, I enjoy him because he gives me actual information.  So tomorrow is just a follow up visit from the other appointment I had when I first started my steroids.

I'm not nervous about this appointment; I'm in fact hoping he tells me I can start weening off the steroids even more, but I doubt it.  That's the part I'm afraid of.  When I stop taking steroids.  I don't know if it means I'm going to go back tot he way things were or if I'm actually getting better with this medicine.  So cross your fingers and toes kids.

Henry hurts a little today.  I have been working a lot which is totally fine and exercise is encouraged in the articles I have read.  But he does hurt, probably also has something to do with the shin splints I think I have.  Now I'm no doctor but my shins have been KILLING me.  Tomorrow is my day off on top of the doctor's visit so I'm hoping to just chilllllllllllll all day.

And tomorrow I plan on writing about some wonderful books I have been reading.  Or the ones I have always loved.  Also, I love when I get back to check this thing and see comments.  They make me smile, a lot.