A quick recap 2012 so far!

This blog has kinda fallen by the waste side.  With my new business blog and keeping up with facebook, I guess I don't really feel a need for this blog anymore...

But I will probably regret it later on when I want to go back and look at some pictures, especially of Oscar!

So here's a quick recap.

New Years Eve happened and Mr. Chill and I had a great time!

Then we decided to do more date nights together, which also meant making more time for us, rather than business or networking, and it's been amazing for us.

So we went to NYC for a weekend - for Yingy's baby shower - and had a great time roaming around my favorite city and dining at one of the best restaurants : Scarpetta. 

Then in early February, we headed to Fort Lauderdale to board a cruise where Mr. Chill's sister was getting married. 

Here we are waiting to board the boat.  Mr. Chill was already in his tux, and I was wearing a "bridal entourage" tank.  But I loved my makeup that day!

The wedding itself was great and the bride Sister Chill looked so amazing!  It was the shortest wedding ceremony I've ever witness, but vows were said and people got married, so I consider it one of the best wedding ceremonies in history! 

After the ceremony and cocktail reception, we went to the boat's steak house which was delicious!  It was the best meal on the boat that whole week.

We went to 3 islands on the cruise.  St. Maarten, St. Lucia, and St. Kitts.  

St. Lucia: We were bummed that our boat got in later than other boats, so we missed our boat ride to Tikaye, where we honeymooned.  We had looked forward to some scuba diving and lounging out at our favorite resort, but it just wasn't in the cards.  So we went to Pigeon Island in St. Lucia and relaxed on the beach.

 Thank goodness for our balcony upgrade!  We LOVED our balcony and really enjoyed watching the sunset out in the ocean.  The weather was beautiful the entire week, so the balcony was well utilized and appreciated!

Here's a pic of our Carnival Miracle boat.

My favorite beach stop on the cruise.  A group of us went to Karakter Beach on the Dutch side of St. Maarten.  They played Jamie Cullum while we drank down some Amstel Brights (yes!) and hung out.  I took a dive when a big wave came through, and Chris lost his sunglasses in the water.  Fun all around.  As you can see, it was a gorgeous beach.

 At St. Kitts, we took a catamaran and snorkeled around a sunk tug boat.  That was okay.  The catamaran ride itself was the hightlight.  Free rum punches and sitting out on a big net over the ocean was so cool! Once we got off, I ran into these monkeys!  They were so cute, although Chris was convinced they carried diseases.  But they were wearing clothes!



We got back and was so happy to see Oscar was still in one piece.  He loved his new sitter!

But we did a lot of catching up with our little (haha) pooch.

 We've been taking Oscar to the park once a week after our hikes. 

Speaking of hikes, Mr. Chill and I have been exploring the trails in our neighborhood.  I can't it took us 3 years to get off our lazy asses to hit the trails.  We love Forbidden Drive, but we really love the all terrain trails.  My favorite trail so far was last weeks, where we went down the trail off Mt. Airy Ave, and we crossed a bridge, crossed a stream, climbed some huge boulders, and walk across an exposed sewer tunnel (on top of, not inside). 

Before my wedding season picks up with a vengence, we have a few trips planned out which we're really excited about. Another romantic weekend away in NYC to check out a show I've been dying to see, a staycation in Philly for my 30th birthday (salsa dancing included!), a 3 day Phish Festival (I love my husband), and OBX (5 years since our wedding).  Lots of things going on, in addition to my weddings, but I'm so excited! I know this year will fly by; can't believe it's already March!  It's been a crazy awesome year so far... can't wait to continue the ride.

I will end with this awesome picture of me and Papa Kim.  God, he rocks.



A silver lining...

As you all know, it's been 10 years since 9/11.  I've managed to avoid most of the TV specials about this date, and I've tried not to revisit too many images from this day.

Most of you probably remember where you were on that day.  I don't remember too much, but I do remember, I was in my room at Bryn Mawr.  It was about 8:40 am and I was up, getting ready for class (which during that year was a rarity that I was up that early!).  I turned on the TV for background noise, and then I saw what was happening.  I couldn't believe it. I thought maybe it was a movie.

I recalled that my dad worked near the buildings, but not sure exactly where.  I was trying to reach my dad and my mom, while my aunt was calling me and my AIM chat windows were popping up like crazy.  I knew I had friends whose parents worked in the buildings; people from our church, my parents friends, etc.  Growing up in north Jersey, a good percentage of people we knew worked in that area. 

I needed to know if my dad was okay. I soon found out he was okay, and he was making his way to a ferry.  I'll share his story here as he told me because he doesn't talk about it much.

The morning of 9/11, he was on the PATH which he takes to the WTC building.  Every day, he exits the WTC building and walks across the street to his office building, Deutsch Bank.  This morning was the same routine, except as we walked out of the building, he looked up towards the sky and was shocked to see a plane flying so close.  Then before he knew it, the plane hit the building and my dad ran to his building and into his office.  When he made it into his office, he called my mom to share what he just witnessed.  He was okay, but was shaken up, I'm sure.  He was staring out the window as he talked to her, and he saw the 2nd plane hit.  That's when he knew he had to run.  He hung up with my mom and promised to call later, and he left.  He left his leather jacket behind, his laptop, and other personal items.  He left with only his wallet and his phone.

Not sure what happened between then and getting to Battery Park, but he made it to the Park, called my mom again, and eventually caught a ferry back to New Jersey.  Many hours later, he made it home. 

When my mom called to say he was out of the building, I was so relieved.  I knew my family was lucky to have him home. 

As much as my family pretends 9/11 wasn't a tramatic experience for them (my dad to this day plays it off as it was no big deal and doesn't talk about it much) it was.  Lots of changes came about because of this day.  My dad made a decision to move away from NYC.  He had been there during the 1993 WTC bombing and now this, and he was done.  He put our house on the market and moved to Dallas and soon found a new house and job.  My mom soon followed after my sister graduated college.  Around the same time, my parents love began to grow.  They didn't have the best relationship, but by the time my dad moved to Dallas, he was a new man, and it showed. 

It took me a long to go back and visit Ground Zero.  Everytime I thought about it, I thought of how I almost lost my dad and thought of those we did lose.  Seeing the pictures posted all along the subways was hard, and driving to my family home in NJ was hard because the skyline was drastically different.  When my family relocated to Dallas, I rarely drove up that way, and I guess in some way, I started to forget.

A few weeks ago, I was in NYC for a client meeting and to see friends, and my hotel was in the financial district.  It wasn't until I checked in that I realized that my hotel overlooked Ground Zero.  It was literally next to it, and my window looked into the construction in that area.  I wondered if this hotel was where my dad's building was. 

10 years later, I feel like there is definite healing in my family.  We've all become American citizens since, my family is healthy and happy, and we've all learned not to take each other for granted.  I know we are lucky and I am always thankful for that.

Best email in a while...

My good friend Ying sent me an email this morning:

"For a good time, call Senor Hill."

Ha!  My first event out of the hospital was Ying and Erick's wedding (FINALLY!), and we knew it was going to a fabulous event.  Not only was it beautiful and classy, it was fun and silly.  They had fun plastic glasses and mustaches, which we all soon started to place all over our faces (my favorite was the cHill unibrow and side burns action).  Above is a pic of the bride with my husband looking creepy.

 More recently, we had the pleasure of experiencing a pig roast!  Our friend Link hosts one each year, and this was our first time.  He has this cool pig roasting box, where the pig is butterflied, and then placed in the box, and charcoal is placed on top of the box. It was really cool.  The meat was falling off and was succulent, and really delicious.  I didn't even need any bbq sauce - just plain with a side of vinegared cucumbers.  Yummo!

In preparations for our vacation (tomorrow!), I've been working out and trying to do more yoga at home.  It's hard to get out to the studios (Jai or Bikram) so sometimes I just make up stuff in my living room.  I found a cool yoga app made by Deepak Chopra and his personal yoga teacher (the "rebellious" Tara Stiles, who also makes cute videos on youtube).  Mr. Chill thinks yoga is just like stretching, which really irked me, because indeed I was sweating while doing side planks and warrior poses.  They are not easy!

Anywho, seems like Oscar hopped on the yoga bandwagon with me. Here he is doing his version of the child's pose.

In early June, Liz and Lydz and I went to the Glee! Concert at Wells Fargo.  Yes, as you can see from my pic below, our seats were super close and I even got to kiss Trouty Mouth! Just kidding. 



We were up in the press seats, which was cool because we were able to see the whole arena.  The concert actually used the main stage and smaller stage at the other end, and they danced inbetween, so we got to see everything.  It was a fun concert and made me miss my musical days at school. 

After watching Glee in concert and taking a few hip hop classes at my gym, I think I'm inspired to take on more dance classes, probably at Koresh.  We'll see.... depends on my scheduled.  But I also have some bikram classes left on my card, so I should probably do those first (but sweating in a 100 degree room then walking out to a 100 degrees outside is not my definition of fun).

In the meantime, looks like I'll be focusing on snorkeling, relaxing, getting massages, and doing some yoga in Grenada!  We leave tomorrow and we are so excited.  Mr. Chill and I haven't taken a vacation together alone since our honeymoon so we are looking forward to it.  We have some separate trips planned - him scubadiving while I'm at the spa, but we also have 4 days of nothing!  We plan on actually leaving the hotel a few times for the local fish fry in Gouave and maybe doing some spice shopping and check out some local restaurants.  I hope I remember to take some pictures!

In health related news, I'm finally on my max dose of Azathioprine and I'm excited.  My weekly blood draws are exhausting and my poor veins have had enough, but I guess it's important to keep track of my levels. My hemoglobin never got past 10, so the doc put me back on iron pills (blech).  My last test indicated a normal level, so I volunteered to stop taking it (oops, forgot to tell my doctor that).  My prednisone is now 5mg which is almost nothing to me (especially after taking 60 mg!), so i'm hoping all my side effects will go away soon, and hopefully while I'm on vacation, but I am seriously tired of my acne and overally puffiness in my face and body.

That's it! :) I can't wait to share my experience in Grenada once I get back!

Things are good

... although I look gross.

But when I think about how I felt vs how I look now, I guess I'd rather feel good.  Prednisone does some nasty things to your body.  While it may help me get into remission, it also does wreak havoc with everything else. Check out this list of side effects!

The following adverse reactions have been reported with Prednisone or other corticosteroids:

Allergic Reactions:
anaphylactoid or hypersensitivity reactions, anaphylaxis, angioedema.
Cardiovascular System
bradycardia, cardiac arrest, cardiac arrhythmias, cardiac enlargement, circulatory collapse, congestive heart failure, ECG changes caused by potassium deficiency, edema, fat embolism, hypertension or aggravation of hypertension, hypertrophic cardiomyopathy in premature infants, myocardial rupture following recent myocardial infarction, necrotizing angiitis, pulmonary edema, syncope, tachycardia, thromboembolism, thrombophlebitis, vasculitis.
Dermatologic
acne, acneiform eruptions, allergic dermatitis, alopecia, angioedema, angioneurotic edema, atrophy and thinning of skin, dry scaly skin, ecchymoses and petechiae (bruising), erythema, facial edema, hirsutism, impaired wound healing, increased sweating, Karposi’s sarcoma, lupus erythematosus-like lesions, perineal irritation, purpura, rash, striae, subcutaneous fat atrophy, suppression of reactions to skin tests, striae, telangiectasis, thin fragile skin, thinning scalp hair, urticaria.
Endocrine
Adrenal insufficiency-greatest potential caused by high potency glucocorticoids with long duration of action (associated symptoms include; arthralgias, buffalo hump, dizziness, life-threatening hypotension, nausea, severe tiredness or weakness), amenorrhea, postmenopausal bleeding or other menstrual irregularities, decreased carbohydrate and glucose tolerance, development of cushingoid state, diabetes mellitus (new onset or manifestations of latent), glycosuria, hyperglycemia, hypertrichosis, hyperthyroidism, hypothyroidism, increased requirements for insulin or oral hypoglycemic agents in diabetics, lipids abnormal, moon face, negative nitrogen balance caused by protein catabolism, secondary adrenocortical and pituitary unresponsiveness (particularly in times of stress, as in trauma, surgery or illness), suppression of growth in pediatric patients.
Fluid and Electrolyte Disturbances
congestive heart failure in susceptible patients, fluid retention, hypokalemia, hypokalemic alkalosis, metabolic alkalosis, hypotension or shock-like reaction, potassium loss, sodium retention with resulting edema.
Gastrointestinal
abdominal distention, abdominal pain,anorexia which may result in weight loss, constipation, diarrhea, elevation in serum liver enzyme levels (usually reversible upon discontinuation), gastric irritation, hepatomegaly, increased appetite and weight gain, nausea, oropharyngeal candidiasis, pancreatitis, peptic ulcer with possible perforation and hemorrhage, perforation of the small and large intestine (particularly in patients with inflammatory bowel disease), ulcerative esophagitis, vomiting.
Hematologic
anemia, neutropenia (including febrile neutropenia).
Metabolic
negative nitrogen balance due to protein catabolism.
Musculoskeletal
arthralgias, aseptic necrosis of femoral and humeral heads, increase risk of fracture, loss of muscle mass, muscle weakness, myalgias, osteopenia, osteoporosis, pathologic fracture of long bones, steroid myopathy, tendon rupture (particularly of the Achilles tendon), vertebral compression fractures.
Neurological/Psychiatric
amnesia, anxiety, benign intracranial hypertension, convulsions, delirium, dementia (characterized by deficits in memory retention, attention, concentration, mental speed and efficiency, and occupational performance), depression, dizziness, EEG abnormalities, emotional instability and irritability, euphoria, hallucinations, headache, impaired cognition, incidence of severe psychiatric symptoms, increased intracranial pressure with papilledema (pseudotumor cerebri) usually following discontinuation of treatment, increased motor activity, insomnia, ischemic neuropathy, long-term memory loss, mania, mood swings, neuritis, neuropathy, paresthesia, personality changes, psychiatric disorders including steroid psychoses or aggravation of pre-existing psychiatric conditions, restlessness, schizophrenia, verbal memory loss, vertigo, withdrawn behavior.
Ophthalmic
blurred vision, cataracts (including posterior subcapsular cataracts), central serous chorioretinopathy, establishment of secondary bacterial, fungal and viral infections, exophthalmos, glaucoma, increased intraocular pressure, optic nerve damage, papilledema.
Other
abnormal fat deposits, aggravation/masking of infections, decreased resistance to infection, hiccups, immunosuppresion, increased or decreased motility and number of spermatozoa, malaise, insomnia, moon face, pyrexia.

Um yeah, it sucks.  My face looks all puffy, I have acne on my forehead, and all last week and weekend I had fat swollen feet that were painful with a side of cankles.  Oh and bloat, unsatiable hunger, and the crazy mood swings.  Although, I don't think I'm moody, but my husband seems to think so, especially in the morning. (Shhh... I'm just not a morning person).
Good news is that I've already started the taper, so hopefully by our June vacation, I will be prednisone free, and my face swelling will have gone down and all other side effects will be gone too.


I am also on Imuran (azathioprine) and my doc and I are slowing increasing the dosage of this drug.  This drug, if all goes well, should keep me in remission for a long time.  So far so good and haven't had any side effects from it yet.  I do have to get weekly blood tests to monitor my CBC and liver panel, but everything has been good so far.  My hemoglobin is still low (9.5 last week), but I'm eating more meat and have now added vitamin C, so hopefully my iron will be absorbed better.  I feel great - I don't feel lethargic or tired at all.


In fact recently, I've been doing so much!  Weekly vinyasa yoga classes at Jai and going to the gym (lifting again and doing cardio).  Also been reading a lot:

Amazon

This book actually really isn't that good.  Ha.  It's about a 30 year old girl who's trying to find a husband, deal with her father's death, find purpose in her life, and also deal with ulcerative colitis.  It's an okay book.  I read it just because it was about UC. 

But to prepare for the new HBO Game of Thrones series, Chris and I have started to read the book series.

Amazon

I actually didn't think I'd like it, but I do!  I'm still on book 2, and Chris is flying through the series, but I like it, despite the fact it has zombies and dragons, and it's a bit "fairy tale" - ish... but it's good.  The show so far is pretty close to the book and just got picked up for season 2 so we're excited.

Aside from reading and working out (to fight the fat, fluid retention, and excessive eating), I've been doing a lot of cooking and baking.  For the first few weeks since being home, I had to watch what I ate, so I had to cook, but I tried to find fun things to make so that Chris would enjoy too, like: fish tacos, chicken quesadillas, shepherds pie, curry chicken pot pie, banana muffins, sourcream coffee cake... and now I've started to eat spicy foods and added kimchi back into my diet.  Oh heavens, I'm so happy now.  

One of my best friends got married this weekend so that was a very happy occasion.  We also had our first cHill Weddings wedding this weekend as well.  A few weekends ago, my oldest friend came to visit and we went to Osteria and dined like kings and queens.  This weekend, another great friend is coming to visit.  Soon I will be in Dallas celebrating my sister's graduation, then we'll be in the thick of wedding season...

I couldn't be more thankful for my health now.  I'm happy I can function again and be with my friends and family. 

Good husband tested

When we took our vows almost 4 years ago, we promised to be there for each other in sickness and in health, no matter what. Chris always knew about my disease, but he never really saw it manifested until after we got married. My first big flare that he witnessed was in 2008 while we were preparing to move into our new home. My business was up and running, and I had a new day job. We still had to pack and had settlement coming up, and all I could manage was to lie on the couch in pain. I remember that was a learning experience for both of us, him trying to comfort me, while me trying to hide the pain and function to the best of my ability. Eventually my parents came from Dallas to help me finish pack and I had my first colonoscopy in 5 years. Within a few days, I was back to normal, and we got settled into our new home and my flare became a distant memory.

Since then, things were manageable. I was home a lot so I had more time to rest. My doctor at the time didn't suggest anything new, which should have been a sign to find a new doc.

This time around, chris encouraged me to find a new doc. He left for work one day while I stayed in bed, and gave me one assignment: find and talk to a new doctor. So I did. I was able to secure an appointment for the following day! And I was hopeful. Of course, that's not how the story ended and I wound up in the hospital. But leading up to my admittance day, I tried to be strong, and push through my work, my life, and daily living without being bothersome. It wasn't until my doc suggested I be admitted, I called chris up immediately with never ending tears. Tears not because I was in pain, but sadness because I felt like for the first time this disease beat me. But chris was supportive and talked me through it. The night before I went to the hospital, he made me a great meal and tucked me into bed and just loved me. Later I found out he was just as nervous, but instead of showing that, he comforted me.

Each day he came to be with me, either coming in the morning, or coming during the day, or somethings, multiple visits during the day! And he still had to work! When he wasn't with me, he called, texted, and emailed and asked for updates and kept me entertained. He woke up early every morning and fed and walked Oscar, went to work, visited me, when home and fed and walked Oscar again, and came back to visit until visiting hours ended. He came bearing whatever I needed plus clean pjs every day. One lucky days, he brought me delicious broth or food if I was allowed to eat. He encouraged me to get up and walk around the hospital so my legs would get some exercise. He'd take me by the hand and we'd sit outside and talk, or explore around the hospital, or raid the gift shop.

For someone who usually finds the funny in everything, chris was very serious during my hospital stays. He carried stress, as if he was trying to carry my pain along with all the responsibilities he had at home. I knew it wasn't easy for him, but he never complained and always doted on me with a loving heart. When my friends all asked how he was, my heart broke for him because I knew this was a lot for him to handle, but he did, and he did it alone, all for me.

I always knew he was amazing. I always knew he was a wonderful husband, but he really went over and beyond my expectations. He was simply a godsend and my angel and because of him, I was able to be strong and get better quickly. I wanted to be home with him again.

A nurse noted that my heart rate jumped while taking my vitals when Chris called my room.  She giggled and said, "You must really love him." And I do.  I never doubted it before, but being in a situation like this, both of our true colors were shown, and Chris was amazing and strong each and every day for me and for our little family, and for that, I will always be grateful to him.

The chatty, the miserable, the smelly

Those are the nicknames of the 3 roommates I had during my stay.

Roommate #1: the chatty.
She had already been in the hospital for 1 week after a bad night of drinking. Apparently she drank herself silly and passed out in her hallway and woke up with no sensation in her left leg. She was taken to the ER and later found out she had kidney failure. She was a roommate for the next two days, and she kept bitching that she wanted to go outside to have a cigarette. I understood the first time she cried about it, but it got very old quickly. She also tended to talk to me and share too much about herself, but I usually had headphones on, so I couldn't really hear her. I wasn't trying to be rude, but the hallways are loud and drowning out the world with my endless Netflix shows was helping me get through the day. The craziest part is that the entire week she was there, she never left her room. She didn't go walk the hallways, she didn't even walk to the bathroom. She did have crutches and a walker if she wanted to use it, but she stayed in her bed all day and used her bedside commode instead. She didn't start to walk her iv to the bathroom until she saw me doing it. One day, chris came over and took me outside to enjoy the sun. While outside, I saw another patient come out in her hospital gown and smoke a cigarette. I wasnt trying to be mean, but thought miss chatty would find inspiration to go outside. It didn't work.On her way out, she told me to look her up on facebook. This was after she told me her cliff notes version story of her life of drugs, rehab, food stamps, and living with other junkies. I couldn't handle it. The night she left, I had the room to myself and it was quiet and peaceful.

Roommate #2: the miserable. Oy. This one was bad. She came into the room already upset and mean. She wandered the halls looking for nurses and asking too many incoherent questions. The nurses asked her to stay in bed and change into her gown, but she resisted and insisted on food. The nurses said no to food because she was going to get an iv and possible surgery, but miss miserable went and got vending machine food anyway. I'm not exactly sure why she was admitted, but she had some heart problems and something wrong with her foot. I think they were going to operate on her foot. I'm sure she was in a lot of pain. She had been popping precocets for too long, enough for the nurses to call up the doctor. Miss miserable kept insisting on more pain meds saying it was making her feel worse, so they changed the meds. She kept threatening to take her own pain pills. One time, my favorite nurse asked how comfortable she was with the pain and she said she was in pain but became all skeptical and paranoid and refused pain meds. I don't think she was all there. She stayed for two nights until her surgery, and those two nights, she did not sleep at all and kept all her light on and tv on all night. I let it go because I knew she was in pain and if tv distracted her, fine by me, as long as she wasnt moaning or being mean to the nurses. Every doctor and nurse would visit her and then walk by my bed rolling their eyes or give me a sympathetic "sorry you have to deal with her all day" look. She eventually went into surgery and stayed on a different floor. My face nurse told me he asked them to keep her there and not bring her back. So I had another wonderful night alone. It was heaven!

Roommate #3: the smelly. 92 year old diabetic women with impaired hearing was my new roommate. For her age, you'd think she wouldnt all be there, especially since she couldn't really hear you. But when I heard her on the phone or talking to her sons who visited, she was alert and so sweet. I'm not too sure why she was there- she had some vomiting issues, which subsided quickly. Since she was old and had a hard time moving on her own, she also used the bed side commode, which was placed against the curtain separating me and her. It seemed like a very bad idea the instant she used it. The smell....oh the smell! And it wasnt poop either because she said she hadn't had a BM in days. She also wet herself a few times. But she was so timid and quiet, she never rang for the nurse and sat and waited until they came. So I'd ring the nurse or find one in the hallway so they could change her and clean out her toilet. A few times a day, her IV pump would beep because it ran out of fluid or the fluid wasn't reaching her bc she had her arms bent, but it would beep and beep and beep and beep.... So I'd call the nurses for her. As annoying as it was, I didn't mind bc she was so sweet and despite the smell, the best roommate I had. But she was odd. Sometimes when I'd sit at the side of my bed to work on my laptop or write in my journal, I'd see her little old feet in hospital footies dangling over the side of her bed. It was pretty disturbing because I knew she wasnt reading anything and was infact facing her commode. Maybe she was wishing for the toilet to clean itself. Or she was watching my shadow. Or she fell asleep. Or died. A few times I worried she'd die because she was old and sick. She wasnt hooked up to any heart monitor so I worried no one would know if she did... So I checked in on her every time I got up for something.
She left the night before I was discharged, so I had another solo night where I had the best sleep. I decided to keep the door closed for the rest of the day until I left to prevent any new roommates from entering. :)

So I went on a little vacation...

To Temple Hospital... for 9 nights.  I think it may be my most expensive vacation yet, but hopefully my health insurance will come through.

So where to begin?  

Just a warning, this is a very personal post, one I contemplated for a while if I should even share.  Maybe if not for recent events, I may have kept all of this to myself, but I think it's good to open and honest and also if it helps someone else, even better!

Okay, let's start from the top.

In May 2000, my senior year in highschool, I was diagnosed with acute ulcerative colitis, an auto immune inflammatory bowel disease.  Basically, my immune system kicks into high gear and attacks food and good bacteria in my gut, which causes inflammation.  Usually, it's easy to treat with meds and diet, but sometimes it's more stubborn and can linger for months. My general health has always been good, so I would "flare" once every two years or so, and the flare would only stay for a few weeks, and I was back and in remission.  One thing to note about ulcerative colitis is that there is no cure except surgery.  

The last few years have been tiring.  When I was young and in college and feeling great, I stopped taking my maintenance meds because heck, I was young and vibrant!  I didn't need any meds especially when I was feeling normal.  Looking back, I should've stayed on it.  If I did, those meds which have very low side effects could still be working in me.  But it stopped working years ago.  So we tried slightly stronger doses, along with higher does of prednisone, which really is an awful drug to be on, especially when you're on it 6 months out of the year, for 3 years.  Fluctuating weight gain and loss, fluid retention, bad skin breakouts, moodiness, risk of glaucoma and osteoporosis... I knew I needed to get off this, especially when I realized it stopped working too.

I was fed up with feeling lethargic and tired, and I wasn't my 100%. I kept getting sick from one thing or another, which just aggrevated my UC, so I decided to change doctors and try a new course of treatment.  So on March 8, I met my new awesome doctor at Temple Digestive Diseases Center and we came up with a new plan.   I was going to stay on my high dose of prednisone until my colonoscopy (which was scheduled for  3/24) and then we'd start a new drug called azathioprine (brand name Imuran).  Azathioprine is an immunomodulator that suppresses my immune system, and this drug is usually given to transplant patients at much higher doses.  Many UC people stay on this drug and are in remission for many many years, so I was hopeful.  But as the days went on, I was light headed, and got winded when coming down the stairs.  It took all my strength to take my dog on a walk around the block and my symptoms were not getting better.  I was at a loss at what to do, so I called my doctor and she told me to get admitted so they can start me on IV steriods.

So on St. Patty's Day, while everyone else was out celebrating and drinking, I was at Temple bright and early getting a cat scan of my belly.  Then I slept in my doctor's exam room while the hospital got a room ready for me. Only 6 hours later, I finally had a bed, and I slumped into it, exhausted.  I hadn't eaten all day except for a little cup of soup that Chris brought over for me. 

Immediately after I was admitted, my favorite nurse, Tony, set up my IV line and got some fluids in me while I got my blood drawn.  A few hours later, the intern told me that my hemoglobin level was a 5.7 (normal is 12) and that I needed to get some blood right away. It was a wonder that I was able to walk around the hospital that day.  So that night, we started my IV steriods and my 2 units of some strangers' blood.  As someone who's always wanted to give blood but couldn't because of my meds, I was so extremely grateful for all those who do give blood regularly.  I never thought I'd be in a hospital getting blood, but these blood transfusions, 3 total, really revived me.  I had no idea I was so anemic, but I was darn glad I came in, before I fainted or worse.

Chug chug chug - I felt like a vampire for two days.  I wasn't allowed to eat anything for most of Thursday or Friday.  Eventually, they put me on a low residue diet that only lasted 1 meal, but boy, was it a great meal!  Tanti brought some sweet rice in tofu skin which I had with the sides of egg and soy sauced potatoes that Liz brought along with my jjuk (korean rice porridge).  It was like heaven, after not eating anything for over 24 hours.

But that didn't last long.

The docs put me back on clear liquids:

Bland chicken broth, cherry jello, cherry italian ice (which was good!), and lots of watered down juices like cranberry and apple juice (stay away from their "grape juice").  They also offered me tea, but any caffeine makes my gut go hay wire, so I avoided that.

Because my symptoms weren't much better, the docs moved up my colonoscopy to the 21st (from the 24th). Since I was inpatient, they were able to get me in first thing that Monday morning.  Once they decided that, I was back to NPO (nothing by mouth) the day before the procedure.  At 4pm, I started drinking this....

My normal prep for colonoscopy is gatorade and a dissolveable tasteless solution, but inpatients get this.  I sent this picture to Chris who texted back "Please make sure that is not antifreeze."  Of course, I had researched it on my UC forums and got some tips on how to make this easy.  Liz and Lydia were over to help me with this.  Lydia chilled a full pitcher of this gross liquid in ice, and poured me two small glasses every 10 minutes.  I chugged it like a champ, then I'd bend over from freezing  pain in my stomach, then rest, and repeat.  Fortunately because I was on a clear liquid diet for the day before and no food that day, the prep went really smoothly and I only needed to drink half.  The whole process took me 2 hours instead of the usual 4.

The next day was my procedure, and I was excited.  I thought, once I'm done, I can start eating again!!  That was my hope, what got me through the past few days of not really eating.

The bad news was my colonoscopy was terminated early.  My insides looked so inflamed they couldn't see any further without risk of perforation.  I was so disappointed.  I was even more disappointed when no one came to talk to me about food afterwards!  I went all day waiting for a doctor to visit me, and it wasn't until later that afternoon, they told me I had to be on further "bowel rest," meaning NPO some more for a few days.  The good news was, it didn't look like I needed surgery, but we needed to weigh the options of different treatments.  But they wanted to give my guts time to heal on it's own.  That day was a very bad day. I tried to be strong the entire time I was in the hospital.  I didn't have too much pain, but I felt like I was being punished and starved.  I didn't have any new answers.  I had also received some terrible news about a family friend, and I was on a very high dose of steriods which recked my mood.  I cried all day.  When I wasn't crying it was because I was sleeping or just lost in thought.  Liz came over that day and just laid next to me in bed while we watched a movie in silence.  It was just what I needed.

The next day was much better.  Despite not being able to eat, I had a nice long talk with my actual GI, who I love, did I mention that already?  We made a Plan A, Plan B, and Plan C (surgery).  We were crossing our fingers for Plan A, which was continue with steriods and "treat from both ends" then start azathioprine as originally planned.  Plan B was Remicade, which is biologic drug made from mouse dna and has a less success rate, and the rate decreases as time goes by.  Just like azathioprine, there are some major side effects, but they're low enough to take the risk.  However, if I didn't need it, I don't want it.  So in the future, I'd rather have surgery to get rid of this disease once and for all if my azathioprine stops working.  That was my major revelation that day.

I forget when, but eventually I was given the go ahead for "heavy liquids" which was things like cream of wheat and shakes.  Um, their cream of wheat was disgusting, so I settled with this shake:

It wasn't too horrible.  At this point, I was happy to have something with any taste in my mouth.  I ended up drinking 3 of these that day as my meals.  By the next day (Friday), I was allowed a low residue diet.  Of course, they dinner tray was barely edible - had some fish that I stuck between a dinner roll.  Had a sip of gingerale, which I promptly realized carbonated drinks do not do any good for me.  I waited until Chris came to visit for his daily visit, and we had a romantic dinner with mashed potatoes and gravy and some yellow cake (no chocolate allowed for this girl).

Saturday early morning, I was cleared for discharge!  I wasn't 100% or completely symptom free but my meds finally kicked in and I got my life back.  I was able to eat normal (as normal as I can for now) food and had no pain or cramps, so that was good.  My instructions were to come in for a follow up next week to get more blood work done to get ready for my azathioprine.  This new treatment will be a pain... weekly blood work to make sure my liver and pancreas is okay and they slowly increase the dose until they reach my max level without killing me. :) The side effects of this drug is higher risk of lymphoma and skin cancer.  So, my new project is to find cute bathing suits with UV protection, best high SPF sunscreen, cute big rimmed hats, and coverups for my June trip to Grenada!

Here are some pics of my little hospital room:

My dresser that was also full with flowers from great friends. I also received a lovely sexy card that kept me happy.  And my phone was always ringing with friends and family with their words of comfort and support.

This is the part of the room I was looking at most of the time. It reminded me what the date was and who my nurses were.

But during the day, this was me.  Laptop connected (great wifi at Temple!), either working on wedding clients emails and tasks, watching Modern Family, or hooked up to my ipad watching Seasons 1-3 of Greys Anatomy.

The great thing was, I was in good spirits most of the time during my hospital stay. Aside from that one bad Monday, I was okay.  I was hopeful, optimistic, so grateful to Chris and our friends for their support.  I also knew it could've been worse, a lot worse.  I could still be there with one less body part.  And maybe one day I will, but until then, I'm hopeful that my strength will help me get better.

I start yoga tomorrow so I can get my strength back.  I've lost almost 20 lbs since I've been sick (not a diet I recommend).  Ironically, I'm at my ideal weight, but of course, I've lost a lot of muscle.  So for the new few weeks, I'll be focusing on my eating right until I'm in remission, learning precisely what foods work and do not work for me, practice yoga, learn to meditate, and also learn to listen to my body and it's signals for stress.

This was my long serious post.  Since I've spoken to various people about my disease, people have been opening up to me about their belly issues.  UC and Crohn's Disease is scary, especially if left untreated.  It can lead to colon cancer or toximegacolon.  Talking to doctors about your bowels and poops and other gross stuff can be embarassing, but we all have a sense of humor!  I urge all people over the age of 50 to get checked for colon cancer regularly.  I really urge all young people with any bowel pain to get checked out as well.

Okay, I'm off my soap box!  My next post will be about the roommates I had during my stay.  The chatty, the miserable, and the smelly.