Trying to be More Active!

Since the last Remicade infusion, I’ve been in a slight panic mode.

Oh, hell… who am I kidding? I’ve been in full blown stressed-to-the-max panic mode.

See, without a whole lot of notice, I received a letter from my insurance company (through that awful state aid on Christmas Eve, of all days) informing me I was being dropped on the 31st of December.
HUH?!
Looks like Medicaid dropped that ball they so often do and failed to inform me this was going to happen unless I renewed by the end of November. Um. Why did nobody tell me this when I called back IN OCTOBER TO MAKE SURE?!?!
I mean… pretty positive that when someone calls you about a strange letter they received about losing their coverage and the person on the other end is telling you “You have nothing to worry about. You don’t need to renew until September” one should not be stuck without insurance because of some imbecile!

Sooooooooooooo, while I await in emotional and mental agony, I’m trying to be both, socially active to the best of me and physically active.

**My fresh new PINK New Balance running shoes**

The social activity is, unfortunately, mostly through either internet or phone, because we still only have one car and I’m terrified of overdoing it in over-crowded public locations. All those germs floating about and the amount of immunosuppresants and biologics swimming through my blood, can’t imagine the sinus infection that would inflame this cavity.

On January 2nd, I signed up with this pretty great website sparkpeople.com where you can keep tabs of your caloric intake (to the best of one’s ability) and began taking detailed notes about what it is I’m consuming – FREE! You can join challenges, make new friends, be held accountable and even map your route to see how far you walk/jog!

Now, I didn’t do this because of the new year… simply because it just so happens a girlfriend of mine introduced me to it. She had great success in weightloss and thought “what the hell else could I lose?”. Sign me up!

But, it’s been great thus far. I learned that my cholesterol was way too high, especially for someone with Hypothyroidism. I have also learned how to enjoy beets! I’ve bought a kick-ass new pair of running shoes to start building up stamina in, safely, and a new cookbook to go with the calorie counting.

The next items on my list is: A new scale, a stationary bike, some new clothes, a fitness tracker and a cleansing brush (you know, to pamper my face after all these sweaty workouts!)

While I deal with this excruciatingly long wait with medicaid (and no, some of us used to have a great job and insurance FYI, shame on you for judging!) this is what I have to keep my mind busy outside of tending to my wonderful daughter, who will be turning four in April. Le sigh.

Here’s to hoping I’m allowed to stay in remission.

Happy Weekend, Friends! I hope your 2016 is shining bright already!

What’s in a Diet?

When you have a chronic illness, it really becomes a huge guessing game on what your body can handle in the world of food.

For the longest time, I stayed as Gluten Free for as long as one could before admitting defeat. It didn’t matter. Ulcerative Pancolitis didn’t care if there was wheat or not in my breads or pastas…

The only type of foods that were consistent in making me feel awful or causing sprints to the bathroom were – duhn, Duhn, DUHHHHHHN – fruits and vegetables.
Damn healthy parts of a well-balanced diet.

During the six weeks of prednisone, or, at least until after the colonoscopy, my diet consisted of light protein, soft foods, and – for what seemed like an infinite loop of hell – liquids. NO fruits and NO vegetables… and you know what… I think that played a big part in the healing process.

I missed them. Especially vegetables, not being much of a fruit person.

Dark Chocolate Banana drink with eggs over-medium and lightly buttered toast. NOM.

It really is heartbreaking that vegetables cause some nasty reactions, so the reintroduction has been slow. Frankly, vitamins and supplements just aren’t enough to make up for the lack of the real thing.
Not to mention: It’s hard to explain to your three year-old nightly on why you cannot eat the same broccoli or carrots that are sitting on her plate.

With the prednisone working its way out of my system, I need to keep as healthy as one can when playing the waiting game.

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I’ve started drinking regular two percent milk again and grabbed a couple of boxes of Carnation Instant Breakfasts at the grocers. Most of the time I blend in bananas, or Greek yogurt in place of milk. I think this plays an important part in maintaining hunger while supplementing for what I am missing with all the veggies I know irritate this unpredictable nuisance.

Eggs are made almost every day. Mostly during the weekdays. Scrambled, over-medium, omelet with feta… something light, often with toast. Again, to keep hunger at bay.

Red meat is still limited, which is not a big complaint. It is not too common now for me to crave a burger or steak. Red meat is consumed in this house about once every two weeks. We eat mostly chicken, pork and fish of all kinds. We treat red meat like a dessert, haha!

Like previously stated, veggies have been slowly reintroduced, no peas or corn allowed. Tonight, I’m making Jambalaya (without peppers and onions *sniffle). May be too soon, but it will be filling… and delicious!

Pretty much, UC, among other diseases, make it a little hard to eat healthy when your body rejects most of what is considered as such. It becomes a continuous guessing game and admittance to yourself that you’re a guinea pig to food.

If someone can throw in an idea to substitute fresh veggies and fruits (besides freeze dried) it would be greatly appreciated.
My colon wouldn’t appreciate juicing or smoothies, FYI. 😉

Damn, I miss salads.

 

 

 

 

Holy Wowza!

According to WordPress, I have not made a post in 10 months.

However, it’s only been five!

I spent most of that time in a flare state. I just recently got off a six-week prednisone regimen and am feeling better.Wore out beyond belief, but better.

During that period, I wanted to so desperately post pictures and share what my daughter and me were up to when there was some energy, but, you know… that energy depletes as fast as it comes. The idea of loading pictures and creating a post – even if it were to bitch about how my body was holding up – seemed so tedious. Instead, I have another blog where posts are brief and it’s kept anonymous. I like it. There’s no real obligations with that one, and haven’t posted that much there either in the last five months…

Thanks to my flare becoming increasingly worse in the last week-or-so (the first day of ‘really freaking bad’ was Halloween night, oddly enough) before the prednisone, I ended in the ER and then my amazingly wonderful Gastroenterologist set me up with a doctor who specializes specifically in Inflammatory Bowel Diseases, at the Florida Hospital in Orlando, Florida. Thankfully, this hospital is rated #1 in the state of Florida for Gastroenterology and Gastrointestional Surgery. During this time, I had the Prometheus testing done for my Remicade and Imuran (Azathioprine) levels and another colonoscopy (just cannot get enough of those!)

The testing came back showing the levels of Remicade were at ZERO. Yep, there was not a trace of drug in this shotty system. So, the doctor put in an order to up the dosage to every six weeks and increase the milligrams, along with increasing the Imuran (Azathioprine) to 100 milligrams a day.

The colonoscopy showed there wasn’t any significant damage compared to the one I had in May, and also showed the impact prednisone has on decreasing inflammation. This specialist informed me that – Yes, I do have Ulcerative Pancolitis, but it is more on the Moderate level than Severe. Either or, it sucks.

Fun.

Currently, I am tired, but much (much) better. The effects of the prednisone is wearing off and the urge to eat everything in the house is starting to decrease. I gained the ten pounds back that was lost so fast during the flare. However, the puffiness in the face is still there… and I’m not talking baby fat.

Cross your fingers and toes – I know my family and myself are – that things start to get better and remission will be well maintained. Unfortunately, there is supposed to be more labs with the increase of biologics and immunosuppressants, and the likelihood of getting ill with some bug has increased, but if I can stay out of the hospital, that would be what many call – a blessing.

Have a wonderful, happy Wednesday, my friends! Hope to be around a little bit more and hope there’s been good health on your end!

 

 

 

 

 

Am I The Only One??

There really is no other words to describe the aggravating annoyance that sits within me right now.

Getting to the hospital bright and early this morning, it appears the scheduling department never completed my account to have me in for today for the next Remicade treatment.
Today, at 8 am is when the appointment was made.

Or, not.

The worst part about it: The scheduling department called the house to inform me there was a misunderstanding in the interpretation of my order, and that in reality, I’m two weeks behind schedule.
Seeing how this is new to me, I had no idea.

What?

How come the person in scheduling who has a digital copy of the order did not notice the time-frame which was set via my GI?
The sweet lady who took care of my issues today is the one who noticed the goof.

Now, I have to wait for my GI to release a new order because this scenario voids out the previous one.

At least now it makes sense on why my body has been slowly returning to a flare state…

Am I the only one this has happened to?

If you had or are having Remicade treatments, is this an issue you have/had dealt with?

What became of it?

-Worried-

Mommy Preschool

The one thing I’m thankful for as of recently, is my daughter’s excitement over learning new things.

After careful consideration and keeping a free limited account for months with Education.com, I decided to upgrade my account to plus for $5.99/month and cancel ABCmouse (that was $7.99/month).

Unlike ABCmouse, my daughter is really learning. The key word there. LEARNING – all while having fun.
ABCmouse was ok, but Harloh would rather purchase items with her tickets earned and play with her pretend hamsters.

With Education.com, she loves the reading and math games from the Brainzy Program.

She enjoys the stories. She enjoys the songs. The stories I love because they are interactive, unlike ABCmouse. After (and some during) each story, they have a Q&A game of different kinds that show your child is learning and retaining what was just gone over. They even have versions of tales that children can make their own.

The other great thing about Education.com, is the worksheets. With a free account, you only get a certain amount to print up each month, along with limited game play. With a plus account, you get unlimited everything and can even customize worksheets! Plus, the site has endless ideas for any age level when it comes to activities.

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She is learning so much and we have a great time together, playing games and working on these sheets. I even bought reward stickers for her!

Slowly, I’m acquiring more things to do with Harloh and have extended our time to a few hours a day, Monday through Friday:

Our most recent “Schedule” – Harloh has gotten better with her check marks 🙂

These are pictures taken a week ago during our “School Time”:

Learning the ‘M’ and Diagonal lines

Her attempt to make the number ‘8’.

Learning about weather!

Game time!

Dancing and Moving! Don’t drop that chicken egg…

Lunch. Mmm.

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For movement, there is this YouTube channel that I happened to stumble upon with preschool songs and dances. Harloh and I did a trial run and she loves them. They have slow dances and faster dances, which is great for when you want to get the heart pumping and then wind down. We always start and end with yoga stretches. (Low impact is also fantastic for someone such as myself)

Her two favorites:

Again, this is a great time we have together, up to the moment she takes a nap.

Most importantly, we learn together.

Better get going now, snack time is over and she is ready!

Have a great day friends 😀

Exciting Week That Just Began

Yesterday’s GI appointment went really well and bloodwork came out beautifully!
So far, my gastroenterologist is happy with the results and gave me this long talk of maintenance, which was a little fatherly and reminded me of how much he really cares for his patients.
Even so, he also mentioned that if for any chance this does not work, I would have a decision to make.
It would be either surgery, or continue experimenting with drugs outside of his comfort zone – in which he would have to send me elsewhere because he has a limit. A limit. He pays attention to the side effects and has a limit to what he exposes his patients to.
Damn. It’s about time I find a well-rounded doctor.

Speaking of side effects:
One of the more commonly known side effects of Humira and Remicade is headaches. For the past several months, I have had an increase in headaches that eventually turn to awfully painful migraines. The only change that ties into this is the medication. This was one of a few issues that was discussed at Monday’s neurologist appointment.

Over the last year or so, there has been this loss of feeling, numbing, sharp stabbing pain that has spread from my fingertips down to the elbow, mostly in the left arm. It’s been freaking me out, but whenever it was brought up to a doctor at the clinic, it was completely disregarded. No one paid attention to what I was saying [ “you are young and relatively healthy…” ] – until the recent location and doctor change.
My first appointment and I received a referral to a neurologist. She was concerned because what I was describing sounded like a common issue known as Carpal Tunnel Syndrome, but because the pain and discomfort is located generally in the least dominant hand and forearm it seemed less likely to be the case.

Well. She was close.
I have Cubital Tunnel Syndrome (or Ulnar Neuropathy).
This is due to pressure on the Ulnar Nerve located in the exterior through the elbow, which travels up to your two small fingers.

It’s nice to finally have clarification. It’s nice to know I’m not really crazy and this was really happening.
I now have a reason for the pain and loss of feeling.

Don’t get me wrong, the whole situation sucks. It would be much better to not deal with more pain, but what can I do.

Now, I have added scripts for the migraines and the doctor wants me to take 100mg of Vitamin B a day for the neuropathy.

It’s a start that I am ok with.

Happy July 1st Everyone!

21 Days

It’s been 21 days since my last post.

Frankly, energy is pretty limited right now.

Insurance finally approved Remicade, however, but it took so long the treatments had to go back-to-back weeks, and since then, it’s been pretty exhausting. Sleep is all I want to do.

Honestly, I’m not a fan of these treatments already for the simple reason that they seem to take up so much of your time and there is only so many places the nurses can stab you.
The infusion center in the hospital is filled with people who have cancer, blood diseases and chronic inflammatory diseases such as I. Strangely enough, I feel so out of place. As if there is no reason for me to TRULY be there.
The nurses are amazing, though. They are a little more gentle and concerned than your typical assigned floor nurse – always asking if there is something that could make you more comfortable or stop in to have a chat to keep you company.

Each treatment is going to take a few hours each, so I will be making sure to bring plenty to keep occupied each time.

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Tomorrow is a follow-up with the GI in regards to bloodwork that was recently taken. There needs to be constant monitoring of my liver and kidneys, so no matter what, there is most likely a month where I’m going to get stabbed and blood drained…

and veins exploding…

and bruises forming…

sigh.

The worst part would be if it doesn’t work.

Hating Ye Ol’ Insurance

I continue to make the joke that, if I were fully insured as I was a few years ago before getting sick, there is a possibility that everything my body has been experiencing may never have happened… because… that is usually how it works.

A letter arrived in the mail from my insurance company stating they will not cover or really help with my hospital stay because the hospital did not notify them in one business day : “You were admitted 3/8/15 and released 3/10/15 and we were notified 3/11/15. Well, if anyone bothered to look at the calendar or read any of the my admittance/discharge paperwork, they would see I was not admitted until after hours on a FRIDAY and released on a SUNDAY and they were sent this information on that MONDAY. That, my friends, is one business day.
This is going to be a fun phone call.

To top it off, the very same insurance company has been dragging their feet on the approval of my Remicade treatments. I keep having to harass my doctor’s office to get some sort of idea on where we stand with the approval process, and I feel terrible because it is not in any way their fault. This has taken so long, that my two weeks has come and gone, to which the nurse informed me that I may have to start over again, which puts me at an extra infusion. This is awesome, because you know, I love the idea of getting stabbed so much and sitting there for hours while a treatment may or may not work with some pretty gnarly side effects to look out for.

Many of us with chronic illnesses are at the mercy of our insurance companies, if we even have insurance at all. I am thankful that I have the craptastic plan I do, but it still isn’t enough. They are quick to deny you medications and assistance. If they are not quick, they torture you with the waiting process. It took months before I was approved for Humira and seeing how my UC has formed into Pancolitis, there really is no way one can wait as long.

My bowel movements are starting to regress. And, by regress I mean – they are slowly going back to the way they get when my colon begins to flare. The Remicade has not only wore off some, but the back-up Apriso I am taking isn’t doing much to keep it at bay.

I’m getting nervous.

Very nervous.

My Little Lefty

My daughter is quite interesting in the way she uses her hands.

When she eats, draws, brushes her teeth or throws a ball – she uses her left hand.
When she uses my tablet to play her ABC Mouse – she uses her right hand.

ABC Mouse has been great because twice a week she gets stories, songs, and learns her numbers and letters in a fun and colorful way. However, using her right hand to trace doesn’t really help with her learning to write with her left, if that is the hand she comfortably chooses. So, I bought some PreK activity books about shapes, letters, and numbers from good ol’ Dollar Tree and handed her a pencil…. she picked it up with her left.
Now, her father and I are both right-handed. I can do basics very sloppily with the left, but I have only had to use it when the right was out of commission. Initially, I was nervous because I know left-handed individuals hold the pencil a little differently, along with the positioning of the paper, which is why I just let her have at it and find what feels right.

I am very proud of my daughter. She loves to learn (we call it school, just like what Mommy does) and we do a few sheets of different activities the other three days of the “school” week. [We take weekends off haha] I even printed up some sheets for free from numerous websites, including www.education.com to work on lines, opposites and color-by-numbers!

These are great times to be spent with her. We have fun cutting and pasting (she calls her scissors “sissy scissors” haha) and learning about words with Winnie and friends. Watching your child absorb the world around her and the teachings you give her is far too amazing.

I love watching her grow.

TGIF Means Nothing

…when you are a stay-at-home-mom.

Sure. The other half is going to be home for a couple of days, but it is just a couple of days a week that we are all together for longer than a few hours at a time.

Chores still need to be taken care of and your child still depends on you for what she (or he) cannot do entirely on her (or his) own.

You try to relax, but even relaxing feels a little unnatural when you spent so much time being stationary to begin with. Hospital stays really throw your schedule cock-eyed. Your body tense.

It is just another day.
Followed by another.

Hey! At least I have another day 🙂