Keep your head above the water

“It’s an awful truth that suffering can deepen us, give a greater luster to our colors, a richer resonance to our words. That is, if it doesn’t destroy us, if it doesn’t burn away the optimism and the spirit, the capacity for visions, and the respect for simple yet indispensable things.” – Anne Rice

I’ve always loved this quote. I feel like having a chronic illness has given me more depth and perspective. All the silly little things that use to make me worry or anxious fade away or pale by comparison to my daily struggle to just get through the day. I don’t waste my time getting caught up in those silly things which tend to lead to other problems because I know better and don’t have the luxury of time to make unnecessary mistakes or waste time with pointless pursuits. I have a stronger focus and direction in life and what energy I have I put towards the things that mean the most to me. I’ve learned who my true friends are, I’ve avoided marrying the wrong guy, I’ve found and connected to others with chronic illnesses, I’ve had help finding the perfect boss and school District to work for, and it’s all thanks to my Ulcerative Colitis. It’s a part of me I’ve learned to embrace and be thankful for, despite all the pain and suffering. I’ve learned to ride the waves as they come. That doesn’t mean I don’t break down, or have moments of sadness, darkness, or weakness. Being sick like this takes a lot out of you. I do try to see the bigger picture and make the most of whatever time I do have left, in my day, in my life. In order to do so, I arm myself with whatever grace, dignity, and humor I’ll need to carry me forward. 

Keep your head above the water

Steroids

Looks like I’ll have to be on prednisone again. That’s one crazy roller coaster ride. It’s the only thing that’s ever put me in remission. I’ve been taking half days at work. I no longer care about saving up sick days because I def won’t be pregnant this school year. Sadly. It’s a terrible idea to get pregnant before my colitis is stabilized. Thus goes life. You plan but things don’t always turn out the way you planned them. I do believe things happen for a reason though and that it’s probably best this way. 

On a separate note, I’ve noticed oxy’s have me less frazzled than the tramadol, so I’ve decided I like them better. Even if they are shorter acting. I feel a bit less tired and more clear headed on them as well. I was able to clean and sort through things this weekend so I felt quite productive. I also took it easy and snuggled up with a book. It’s book 2 in the miss peregrines home for peculiar children, courtesy of my high school library. I love teen fiction. 

I’m taking things day by day. Prednisone I’m starting in the AM cause if I start it now there’s no sleeping for me. Thursday is my remicade but I’m not sure if it does anything. My doctor and I are awaiting a blood test to see if I’ve developed antibodies to it. If I have, then I will need to switch to a new medication, of which there is only one left to try, humaira. I do love remicade and knocking out ina recliner for my infusions so I will be sad to part ways with it. I hope and pray it still works for me. 

Steroids

30 Before 30

I know I’m getting ahead of myself here, I’m about to turn 28 in a week and a half, but I’ve been longing for more than the typical birthday list/goals.  I think it is time to plan a more extensive list of things I want to do/accomplish before 30.  I last did this the year before turning 25, and it drove me to do more things than I otherwise would have.  I didn’t do it all, but I did a lot.  I will have 2 years to tackle the following goals – its a pretty modest list with a few reach goals.

30 Before 30 List:

  1. Go on 1 big international trip
  2. Complete the 5 boro bike tour or similar bike tour
  3. Complete 30k in running/walking races- can do six 5k’s or three 10k’s
  4. My usual read my age in books goal -28 when 28; 29 at 29 and 30 at 30
  5. 30 Blog entries before 30 (can be split between my 2 blogs)
  6. Increase contributions to retirement fund to recommended 10-12% (because its the smart “adult” thing to do)
  7. Get student loan under 30k (a slightly ambitious goal for 2 years)
  8. Go to the gym 3x’s per week and sign up to get my health insurance to pay for it
  9. Take up a sport with a friend or group or league
  10. 3 mini/long weekend trips
  11. Go camping with the family
  12. Complete 30 craft projects
  13. Send 30 cards to friends (because getting mail is awesome!)
  14. Start and finish reading The Study Quran
  15. Do something extra at work (beyond what is typically required)
  16. Help Syrian refugees in NJ (now that I’ve met a bunch)
  17. Save $ for down payment on a house, put in investment account
  18. Cook more – bring food to work at least 3 days a week
  19. Eat less – fast 1-2 days per week
  20. Hike 30 different hiking trails
  21. Grow my family by one
  22. Establish a “Date Night” bi-monthly
  23. Start or host a group or class
  24. Try 30 new restaurants
  25. Attend 3 concerts/plays/performances
  26. Learn to speak Bosnian through app/hubby/in-laws
  27. Take an Arabic class to improve my Arabic
  28. Potty train the little guy
  29. Teach my baby to read
  30. Write a book

Starting today, I begin.

30 Before 30

Do What You Love!

This past Thursday, my husband and I took off from work and decided to go on a daycation!  Its been hard for us to do anything alone as a couple since the baby was born.  We’ve gone out literally, a handful of times in the past 9 months, including to the NY philharmonic, a jazz club/restaurant, to see Interstellar in theaters, and to a wedding.  I guess that’s almost a handful.   For this trip, we left the baby with the babysitter (for the usual 7 work hours) and drove up to Cold Springs, NY and spent the day there exploring, biking around town, eating, shopping, and enjoying nature – all the makings of a perfect day in my opinion 🙂

We begun the day with brunch at Hudson Hil’s Market and Cafe where I tried, and deeply enjoyed, their shirred eggs on Swiss chard with mushrooms and fontina, along with some home fries and a latte.

IMG_6165 (1)

Next we went biking around town.  We also explored areas down near the Hudson River and found some breathtaking views and a nice spot to rest and enjoy the scenery.  My husband took some awesome panoramic photos with his iphone (my iphone is currently old and cracked and is badly in need of replacement).

IMG_6177

IMG_6175

We went shopping and bought some interesting things – local honey, jam, and some books on hiking in the lower Hudson Valley (for future adventures).  I also found and bought a locket from an antique shop that I plan on placing pictures of my babies in (the old fashioned instagram/phone photo album).  I’ve always wanted a locket.  I love the long chain and the simplicity and smoothness of the oval design, as well as the secret functionality of keeping something so personal and treasured hidden inside is just so magical.

We ended the day with some ice cream from the Moo Moo Creamery.  I chose the maple, cinnamon, and walnut flavored ice cream inside a waffle cone.  That was the best ice cream flavor I’ve ever had (up there with El Laboratorio Del Gelato’s pistachio and salted caramel flavors in NYC).

Overall, best daycation ever.  Did my favorite things all in one day.

Do What You Love!

The Little Moments 

Its the little moments 

That make my day.

Seeing his face light up

As he catches a red balloon

His favorite color

Then shakes it around

And tries stuffing it in his mouth

Even though it’s at least 10xs larger 

It’s the sound of his shrieking

And gurgling and cooing

And chirping -he often sounds like a bird

And the occasional mama

Still a sound with no meaning

With enough power to melt my heart 

I am astounded and amazed

At all the personality traits I see

So early on yet so strong

Charming, sociable, industrious, self-reliant 

You’re full of –

Curiosity, wonder, determination

Your future and all that you can and will accomplish 

Seems limitless. 

May you get up when you fall

And learn from your mistakes 

May love always surround you

And peace fill your soul

May the light inside you continuously burn 

And drive all that you do. 

The Little Moments 

Living with Chronic Pain – A Poem



I read this quote recently at a time when I was suffering with my health. I’ve been living with Ulcerative Colitis for almost 5 years. The first 2 years were the worst – filled with several week long hospitalizations, uncertainty, new medications, and pain. It’s an autoimmune disorder with no clear cause or cure. Towards the end of that dark period I met my husband who fell in love with me and insisted on getting married regardless of what was to come. After getting married I had a wonderful 2.5 years symptom free and reduced or got rid of most of the medications. I had a healthy pregnancy and gave birth to a beautiful healthy baby boy. But now it’s back. And I’m struggling again but I have hope and I am patient. Everyone has their challenges. I felt that writing about it would be cathartic for me so I wrote a poem, something I haven’t done for a while and here it is. My religion, Islam, really has helped me to stay grounded and maintain perspective in times of darkness in my life and I am forever grateful to God for all that has happened in my life and the wisdom behind it all which I’ve only come to appreciate after the fact more completely. 

I want to say to anyone out there suffering with chronic health issues – live your life to the fullest. Don’t give up or give in or let people place limits on what they think you can’t/can’t achieve or what you should/shouldn’t be doing. I thought at one point I would never get married or have children because of what people actually did and said to me about my health and I almost pushed away my husband when he was interested in getting to know me because I didn’t want him to suffer or hurt him with my suffering. It was an Imam from California who I went to for consolation about another issue that answered questions I hadn’t even asked but had been burning away at me. He told me to get married, have kids, live my life. He told me his wife and her sister both have Lupus and I saw how happy he was when he lit up and spoke about her. And that gave me the courage to move forward with my own life and go after what I wanted in spite of being made to feel less deserving/less human by some people’s attitudes in our community towards illness – especially when it comes to marriage. 

Everyone will be tried and tested with things in life – what defines us is how we deal with those challenges. 

Poem:

Living in chronic pain

A thousand lifetimes in the blink of a second
A dessert to cross
One scorching footprint at a time
A purifying cleansing inferno
That which completely consumes the self
Until nothing exists but Him and you And you are in His presence always
Walking alongside Him
A transcendent honor, a taste of otherworldliness 
That temporarily frees you from 
The timeline that bounds you 
Towards an unknown destination. 
In your mind you’re screaming
For that relief after hardship
The ease that’s promised. 
The embrace of mercy
A release into an ocean of weightlessness. 
Existence without pain. 
You yearn for a finality that feels elusive in spite of knowing its unquestionable certainty. 
Patience. 
You know it’s beneath you
To disturb the harmonious peace of the world. 
For that which is discordant within 
And you must strive to pace forward
Inch by inch
With every last ounce of dignity 
However much longer there is to go. 
Brace yourself with prayer and patience
And shine your light on the world as long as your torch may burn. 
Strive to guide and give warmth 
Not destroy and scorch. 
For the end is near always nearing. 
And what we leave behind shapes our destiny. 
Pain and mindfulness. 
Live your life in the spaces between the sentences – if it must be so. 
Let your light shine from behind the cracks. 
Your shell is but a shell. 
Your soul is a graceful thing
So let it sing. 

Living with Chronic Pain – A Poem

Physical/Occupational Therapy

So I read this NY Times article today.

I think that this is happening because kids are physically restricted more and more with their lack of movement in the classroom (and at home if they’re on the couch all day), their limited playtime both at school and at home (tv, video games, and iPads don’t count), in addition to increasing academic demands starting from such a young age.

Physical/Occupational therapy are cool fields to work in and I’d recommend it to someone considering becoming a teacher (increasing state testing demands and teacher evaluations are ruining the field and become increasingly stressful) or psychologist (too much schooling that people often don’t follow through with leaving job prospects minimal) because it could be more fun, less stressful, yet just as rewarding. Plus there’s a shortage! Good job prospects are important! (Both physical and occupational therapy are great and needed in many public schools – this article cites the high demand for them in NYC).  Its wonderful working with and providing services to children and this is one way to do so.  Plus working in schools has the added benefit of giving you summers off and great benefits, while allowing you, if you’re a parent to be on the same schedule as your children.

I take my baby on play dates at a physical/occupational therapist’s office. They have all kinds of toys/equipment to help with different skills for kids of all ages. It’s so much fun and helps with their development!  One of the things the therapist who host’s the play groups told me is they are increasingly seeing cases where the kids don’t have a diagnosis, they just have poor muscle tone.  The importance of movement cannot be stressed enough.

On a side note, I know sometimes parents are reluctant to let their children get services because they don’t want to think something is “wrong” with them.  That’s the wrong way of looking at it though.  Parents shouldn’t be afraid of accepting services from public school if your child needs them. They’re helpful and free!

If you’re a teacher, its important to think of how you could better incorporate physical movement in your lessons. It often helps all children focus and stay engaged and makes lessons much more fun! This can be done all the way up through high school where it’s still just as important to move/practice physical skills.  One example I’ve heard recently is of teachers taking students on a nature walk to help brainstorm ideas before a writing assignment or discussion.  Its both relaxing, physically stimulating, and a productive use of time.  Students in Finland score extremely high (MUCH higher than the US) on tests and they are in school less hours per day and take a break and go outside every 45 mins!

If you’re a parent there are millions of things you can do.  Take your kid to the park – every day or several times a week (helps with gross motor skills).  Play with them, kick or throw around a ball – its completely free! And it’s good for you to get moving too!  If you want them to play with other kids and your park is lacking in children at the times you are available – look for or start a meetup group (meetup.com is awesome!) and get together with other parents/children at times that are convenient for you.  There’s something for everyone if only you look for it.  If they need help with fine motor skills – give them coloring books (to practice pencil grip), thread beads, practice tying shoes and zippering, do puzzles with them.  It seems like common sense, but a lot of parents seem to just hand their kid an ipad/video game, or put them in front of the TV because they’re too drained to do anything by the end of the day.  Get crafty and make a scrapbook together – letting them do some of the cutting and pasting.  Not only are you creating wonderful memories and building their skill set, and confidence, but you’ll have a memento you and they will treasure forever.  Let your and their creativity flow and run wild!

Physical/Occupational Therapy