It's Been A Long Time...

"It's been a long time I shouldn't left ya" - sorry,  I love music some may know the song and some may not! 

Well,  it really has been quite some time since I gave an update but I received a text today informing me it was time (thanks Gina) so here I am writing. I've been getting better each day and my weekly blood work is improving. Unfortunately, that great thing called fatigue is still taunting me on a daily basis. I can stay awake longer than 2.5 hours so that's great, I'm making it through a half a day without taking a nap. These days I get excited if I stay out of my bed all day so I'll roll with the half a day for now. Other than my numbers improving, I'm still on the waiting list and my MELD score is still a 30. For those who don't know what a MELD score is I can give a quick explanation; basically it's a scoring system for assessing the severity of chronic liver disease. Another highlight is my abdomen isn't nearly distended (bye-bye 6 month preggers belly) so I don't have the pressure and pain. Oh, I forgot to mention my eyes are still slightly yellow and I haven't fully gained my weight back but in due time that should change. 

So things are looking better everyday! Don't get me wrong I still have my bad days where I just need to lay in the bed because I don't have the energy to do much of anything. I don't have too many of those days and then I have days where I want to do everything and my body quickly reminds me you're NOT there yet so SIT DOWN! If my body isn't reminding me my family let's me know when I come up with plans to take weekend trips. These weekend trips always consists of a plane, warm weather and beach...I know it's not happening but I can still dream for right now. Instead, I just settle for my local drives to get me out the house and keep my spirits up! 

I always remember I'm on my JOURNEY so the trail gets a little rocky, bumpy, flat and sometimes its uphill and downhill. I'm prepared to walk and/or run whichever way it goes as long as I make it to the end! 

Mani, Pedi and Migraines

I went to bed on Thursday with stomach pains and a migraine (for those who have never experienced one its like your head is about to pop off and roll down the road hitting every pothole) so I had to take my lovely cocktail of Tramadol, Benadryl and Reglan to get rid of it ASAP.  Of course, I was a little annoyed because it was the Season Finale of How to Get Away with Murder and it was almost over. Well, those meds kicked in and I was in LALA land.  Guess I’ll be watching it again on On-Demand. It’s nite nite time.

Friday:

I woke up this morning and did my usual, checked on Milo (that’s my dog) and turned the TV on to The Today Show. Shortly after, my chef came in and asked me what I wanted for breakfast to which I had no clue. So she surprised me. I started to eat my breakfast and the nausea started. Something wasn’t right but I ended up finishing my breakfast so I could take my morning pills and decided that I needed a nap. Off to sleep I went!    

After my nap I decided that I would get a manicure and pedicure today. I use to go every week but since I’ve been sick I haven’t been able to go as much but I was going today.  I made an appointment (my manicurist knows I hate waiting and I like to go when no one is there) for 7:30 p.m. Sick or not I don’t go long without getting my hair and nails done. It’s two things that make me feel like my life has some normalcy.  What I didn’t factor in to this time was that I’m usually tired at night so of course by the time I got out the car I was tired. If anyone could ask me what I hate the most about having AIH it’s the constant exhaustion. I’m use to being on the go and this disease will knock your ass right on down! 

My day wasn't that productive but I did get out the house.  It's so funny to me that I could have a perfectly good day where I'm feeling fine and the next day is the exact opposite.  All in all I just take it in stride and realize this a JOURNEY. I'm just walking the walk - but not alone because I have a bunch of support right behind me, on the side of me and sometimes in front of me.

Doctors, Humor and Fashion - The Follow-Up Appointment

Today I had a follow-up doctor appointment with my overly stylish, equally as intelligent with a splash of a sarcastic, sense of humor Hepatologist.  I guess I choose my doctors the same way I choose my friends. Anyway, my follow-up went pretty well, I'm still a little jaundice (especially in my eyes...that would be that yellow glow) but my abdomen isn't distended (thank goodness I couldn't take that odd body shape) and my energy level has increased. I don't think I'm ready to run any lapses around a track but I might be able to stay awake a little longer than 2.5 hours. My blood work results (remember my post Stuck on Mondays) are improving too.  So your girl is pretty happy. No tears (well minimum) were shed today. I'll check back in the office in a month but remember I'm kind of a big deal so my doctor will check in on me. 

After the doctor appointment, I was starving (anybody that knows me understands when I reach starving the mood shifts instantly) so off to Maggiano's we (me and my chauffeur-which btw I couldn't ask for a better one) went to grab a small bite to eat. That small bite turned into two entrees, an appetizer and a dessert and some random Indie artist singing live.  One thing this disease hasn't done is change my love for food, it might slow down my appetite but it picks right back up like it never left. After a quick stop to a store we were on our way home. I don't remember the ride because my exhaustion kicked in and I was knocked out for the count. 

I will say I never know which way my doctor meetings are going to go or where my emotions will land but today was a GOOD DAY. I got out the house, had a good appointment and ate some good food. I guess you never know what to expect out of your day when you wake up. At this point in my life I just hope and pray for the best and keeping an open, positive mindset definitely helps! Relish in the positive because staying in the negative is way too draining! 

Night All! 

Stuck on Mondays

The weekend is over and you are probably still tired from partying, drama (I’m sure someone had a little) or running errands but its time to get up and face the beginning of the week.

My Monday's start with my standing date with Quest Labs. It’s like every week we play the same game. I think I’m prepared and ready and my veins are on another page. I mean I spend all day and night on Sunday drinking water, running back and forth to the bathroom (I’m a petite person that water has to go somewhere) and my veins still don’t cooperate. I’m convinced they have a mind of their own. Anyway, I make my way to the lab and what is the first thing my phlebotomist asks, “Did you drink your water?” one day I’m going to give her the blank stare face! Instead I just answer yes and the game begins. She tries to find a “good” vein and they want to play the damn hide and go seek game. As my godson would say NOT TODAY, you better plump up! Well, finally she finds one and starts filling the 3 tubes. Thank goodness is all I can think and I’m done.

Now, I can finally make it back to my warm bed to get some sleep or so I thought. My chauffeur had a different plan and decided to run to the market (I might have to start using Uber) to pick up a few things. So now, I’m stuck in the car and all I wanted to do was go home and sleep. I’m just simply having one of those days where I’m drained physically. Of course, that doesn’t really matter because once I got home I was still Team No Sleep. I was on the phone, texting and started writing and now I can’t go to sleep because it’s Monday and I have another standing date with Adam and Pharrell… that would be with The Voice. So gotta go!