Intense Complexities... Intense Simplicities...

“Out of intense complexities intense simplicities emerge.”

- Winston Churchill

My extremely talented and dear friend Terry is taking a class called The Figure. It's all figure drawing, but their final is to create an article of clothing made from some sort of unconventional material (Project Runwayesque if you will). He created this skirt and a hat out of over 350 coffee filters which he hand painted with watercolor.

He asked if I would be his model for it... how could I refuse? Cory and I went out for a photo shoot yesterday. It was the first time the sun has been out in a LOOOONG while. It was so cold though that I thought my ears and fingers were going to fall off :(

I think it was well worth it though because we got some amazing shots.

Intense: Possessing or displaying a distinctive feature to an extreme degree; Strained; Tightly drawn; Kept on the stretch; Strict.

Complexities: A conceptual whole made up of complicated and related parts; Characterized by a very complicated or involved arrangement; So complicated or intricate as to be hard to understand or deal with.

Simplicities: The state, quality, or instance of things being easy; Freedom from complexity and intricacy.

When you are diagnosed with a chronic disease such as UC, life gets intensely complicated fast. I know when I was first diagnosed I felt extremely overwhelmed. How was I going to manage my pain? How was I going to be able to handle the struggles of everyday life with this disease? How was I going to take care of all of this financially?

When life gets too complicated and complex, you are reminded of what is truly important: The simple joys of life. You soon learn that as a part of your recovery, you have to be able to find this joy and hold on tight to it: It's in seeing the green leaves turn to shades of red and gold in Autumn. It's in the laughter of an inside joke you share with your partner. It's in spending an entire day in your pajamas reading magazines and watching movies. It's in wearing a skirt and hat that your beloved friend made out of coffee filters.

The holiday season is known for bringing stress: fighting crowds in order to find the perfect gifts, slaving in the kitchen to bake holiday goodies for the numerous holiday parties and family get-togethers, battling the gloomy winter weather. Remember to take a step back from the stress and find the joy in the simple moments of this winter: placing ornaments on the tree, frosting snowman shaped cookies, wearing your favorite hat and scarf that had been packed away and watching the smiles that emerge as people open their gifts.

Happy Holidays everyone and here is to a wonderful New Year.

Unsolved in Your Heart

"Have patience with everything that remains unsolved in your heart. Try to love the questions themselves, like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day."

- Letters to a Young Poet, Rainer Maria Rilke

I face this problem daily. I exhaust myself trying to find the right answers... trying to "fix" everything. I worry about making the wrong choices and prolonging my pain and anxiety. When there are so many paths to take it seems impossible to wholeheartedly believe that the path you choose is the best one.

I believe that everything happens for a reason and I am having to go through these struggles in order to solve the things that remain unresolved in my heart. I pray for patience, for strength, and for perseverance. I pray that I am making the right choices for my health... for my life.

When dealing with an incurable disease like UC, it's hard to know how to best heal the symptoms and go into remission. Is drug therapy a safe option? Can I ever live a life free from drugs? Are my medications causing side effects? What foods should I avoid? Is there a diet I should follow?

I am currently taking Lialda, Prednisone, and Mercaptopurine for my UC symptoms. I lowered my dose of prednisone and started experiencing sharp pain in my left side and in my lower back so I have since gone back up to what I was originally taking.

I am also taking Lamotrigine for my depression and anxiety. I believe it is helping. I used to cry everyday and started avoiding going out and since taking lamotrigine, I haven't felt so overwhelmed by everything life has been throwing at me. Hopefully this will turn out to be the right path.

I am not completely comfortable with the fact that I take so many pills. I often wonder if I am helping my colitis but causing other problems for my body.

I've started to look further into diet options and am considering trying the Specific Carbohydrate Diet (SCD).

I just want to do what is best for me and for my body. I want to go into remission and I want to do it safely.

The Universe has the Answers

"I never paint dreams or nightmares. I paint my own reality."

- Frida Kahlo

First off, I have to say thank you, from the very bottom of my heart, to everyone who reads my words, sends me emails, comments on my posts, and follows my Flickr and website. Your words, thoughts, and prayers help renew my hope, give me strength and remind me that I am not alone in this fight. We all get overwhelmed at times and it is such a blessing to be reminded that things can change for the better.

Art has always been an outlet for me. I have been drawing ever since I can remember. Growing up, there was always a pencil in one hand and a pad of paper in the other. I would seek out my parents, constantly asking them,"What should I draw now!?" In the seventh grade I was fortunate enough to meet a teacher that saw something special in me and my artwork. She encouraged me to enter competitions and consider going to art school someday. Until that point, I never even thought that I could make something I loved doing so much my career.

Mostly I see my art as a blessing, but sometimes, when life seems too complicated, it can feel like a curse. Making a living as an artist isn't an easy path to take. The term "starving artist" often comes to mind. I am an artist and that is something that can't be changed. I will never be happy working in an office with my eyes glued to a computer all day. I will never be happy pushing people to sign up for credit cards and spend more money than they have. I have to create in order to be happy and in order to be true to myself. I am fortunate enough to have people in my life who support me and will do all that is possible to help make my dreams a reality.

The past few days I have had a pretty immense migraine. My eyes are even swollen. Migraines are exhausting: all I want to do is sleep but the pain is so sharp I can't. It's feeling a bit better today... hopefully it will only continue to get better and better... Maybe it will even vanish!

I was supposed to see a specialist on Tuesday. They even confirmed my appointment the day before, but a few hours after calling me, they called again only to report that the doctor's house had caught fire and he would have to reschedule. Um... WHAT!? Maybe I am a curse to all my doctors. I was then referred to see Maja Bjur, a nurse practitioner specializing in psychiatry and who works at finding the right doctors for people who have been "tossed around" when it comes to solving their medical issues.

I walked into her office and saw Georgia O'Keefe paintings adorning her wall. I took it as a good omen.

We talked about everything including the fact that I have been feeling as though I am not strong enough to survive all this. I have been battling for almost two years now and just want to live life again. She said something that really hit me: "The universe has the answers and you have been brave enough and strong enough to seek them out. Years from now you will look back on this time and marvel at your strength and perseverance."

I am ready to have those answers. I am ready to be healthy. I am ready to love living. I am ready to pursue my dreams and stop letting the fear of failing overwhelm me. I am ready to make a living doing what I love to do.

Use the Pain as Fuel

“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.”

- August Wilson

Ulcerative Colitis has changed my life. It has brought such pain and loss. I wish that I could just live ever day without it, but it is a part of me that can't and won't be ignored.

I first got sick a little over a year ago. Ever since, I have felt as though I have stood still but the world has kept going. I have been left behind. Everyone else has grown and matured and accomplished goals and I have ruined everything in my life.

The pain and sadness has so consumed me that I can barely get out of bed. I spend my days sobbing, hoping for an end. It's exhausting and all I want to do is sleep but my mind is always racing so sleep evades me. When I do manage to nod off I have horrible nightmares.

I try so hard to concur the bad feelings: I ignore it... I write about them... I scream... I cry... I start projects... I take on the problems of others... I make art... I read. None of it matters though because in the end I feel no different. This anxiety and depression is real. There is no way of wishing it away or looking at the world more positively. I need help. I want help. I want my life back. I want to be happy.

I have spent my entire life pressuring myself to be perfect. I had to be smart and know everything in order to achieve the best grades. I had to be beautiful, have every hair in place and dress to the nines. I had to be independent and spend every minute working and challenging myself and doing everything people ordered me to do. I had to keep all my feelings inside because weakness wasn't tolerated.

I believe a lifetime of this stress and pressure has finally caught up with me. My body can't take it anymore. My soul can't take it anymore.

Everyone keeps telling me to listen to my heart but I feel if I do I will be letting them all down. It's tough to feel so lost.

Currently I am taking Lialda, Prednisone, and Mercaptopurine. My stomach has felt much better and the bleeding has stopped. My health insurance is changing (I will be turning 23 and will no longer be on my parents insurance) and I hope and pray with all my heart that I'm able to remain on the same plan so I can still see my doctor. My dad believes it is the medication that is making me so "emotional" and I should just stop taking it. He is ignorant about it so I must forgive him for not understanding.

I have an appointment on Tuesday with a counselor at the hospital to find a solution to my depression and anxiety. I have tried to beat it on my own, but it just isn't happening. I can't waste anymore of my life feeling this way.

I was hired as an admissions advisor for an online college. I went through the training. I had to call it quits. I jumped into it while still feeling this way. I have spent a year being afraid to leave my house becasue I needed to be near a bathroom. I spent a year hiding from people because I felt ashamed. It's no wonder I felt overwhelmed at being hired on full time surrounded by people and expectations. The timing was all wrong. I wanted it to be the answer. I still wish I felt as though I could have done it. It might have fixed some of my financial worries sooner, but it never would have fixed my true issues. I worry I will never be hired for anything ever again. I worry my life will just be a series of dead-end, horribly paid jobs. I want a career: I want art to be a part of it.

On Wednesday I am going to a meeting about the GTEP Program at PSU. I'm starting to take the steps neccessary to get my teaching certificate. I have registered for the CBEST Exam: I'm scared. I don't know if I can pass it or any of the other tests I need in order to get into the program. Tests have never been my strong point. I am so very tired of feeling so dumb.

Also on Wednesday I will be going to PNCA to photograph some paintings and a drawing I have been working on. The drawing is for the Society of Illustrators Competition. I don't know if I should be spending the money on it right now, but it is my dream so I guess I just have to go for it.

Saturday is Halloween. I usually adore dressing up, but things have been so hard that I haven't had the time to even think about having Halloween fun. It hurts my heart thinking a may have to give it up this year. There are too many other more important things to deal with.

Every second of every minute of ever day has been a struggle. I hope I am finally on the road to answers and solutions...

The Thing With Feathers...

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

Emily Dickinson

I have been really thinking about what it means to have "hope." It's a simple, four letter word that can change your whole life. Hope that you'll be able to finish that book you started reading. Hope that those shoes you've been dying to own will finally go on sale. Hope that you are taking the right medications. Hope in a cause. Hope in a fellow human being. Hope that tomorrow will be a better day. Hope that you are doing the right thing. Hope that you are making a difference. Hope that our desires will be fulfilled. Hope in what cannot be seen.

I'd love to be able to say that I have all the hope in the world. It's hard to have it though when you feel as though you are suffering and that no matter how hard you battle nothing will ever get any better. That's what the depression of having a chronic illness can do to you. It can take away your hope if you let it.

It has been awhile since I've discussed my battle with this thing we call "Ulcerative Colitis." I've mainly been quite due to the fact that I have been fairly miserable: lots of pain (both physical and emotional). Life has just been exceptionally hard as of late and I haven't had much new news to report when it comes to my condition. My mind has been filled with so many other stresses and worries that the idea of taking time out to write seemed BEYOND insane (a choice I am now realizing was extremely foolish). Writing can be a saving grace... remember!?

So here I am... I was never really gone... I was just distracted by all the noise of life. I think it is time to take a step back, breath, and grab a hold again of all I hold dear.

I believe writing, reading, and researching about this disease is extremely important and I bet that others who suffer (or are close to those who suffer) feel the same. Sharing our stories is what keeps us afloat... It keeps us hopeful that we can live normal lives. Hiding and concealing the pain just makes life that much more unbearable.

I went in and say by gastroenterologist (Dr. Grunkenmier) last week. The pain in my left side and lower back was becoming torterous again and the bleeding had come back. I had been afraid to go back to the doctor because I didn't want to hear the news that I would have to go back on prednisone. Well... that is the news I got. HOWEVER, he also wanted me to start taking an immunosuppressant (a drug that lowers the body's normal immune response).

I was hesitant at first to start taking a new medication. It's hard to be put on drugs and taken off drugs. It's hard to know if you are doing the best things for your body. I guess this is a perfect example of having to have hope. Grunkenmier is a wonderful man. He sat down in front of me and truly talked with me. He didn't just poke at my stomach, write me a prescription, and send me out the door. I spoke and he listened. I discussed my fears and he vowed to help me overcome them. I had a hard time not getting all choked up to be quite honest (especially when he said I shouldn't be ashamed of the depression and anger I had been feeling due to the fact that having a chronic illness such as this can be devastating). It felt good to be validated and it felt good to have a new plan of action.

I am now back on 40 milligrams of Prednisone (it does affect my mood but it also does stop some of the pain and bleeding. I also am still taking 4 tablets of Lialda daily. And now I am taking Mercaptopurine. I have to go back later this week for some blood tests to make sure it isn't affecting my blood and liver negatively. I'm scared. I want this to be the answer for me.

I am feeling better... I only hope it lasts and continues to improve everday...

Limitations

"Don't believe what your eyes are telling you. All they show is limitation. Look with your understanding, find out what you already know, and you'll see the way to fly."
-Richard Bach

Last month was one of the most wonderful, horrible, insightful, crazy, epic months of my whole entire life. I presented my Thesis and graduated from college with a Bachelors Degree in Fine Arts.

There were times when it seemed as if I couldn't even fit breathing into my schedule. There were times I just wanted the board to be blank so I could stay in bed and rest and not feel guilty about it.
But May is over and I survived and I accomplished even more than I thought was possible.

I've been thinking a lot about the word "Limitation."

Limitation: restriction, curb, restraint, control, check; bar, barrier, block, deterrent, flaw, defect, failing, shortcoming, weak point, deficiency, failure, frailty, weakness, foible...

There have been so many times within the past few months that I have looked at myself and have tried to come to terms with my weaknesses: to realize the potential that I have and focus on what I am able to achieve instead of what I'm not. I am not saying that we cannot rise above the things that seem to limit us, I am only saying that we have to do it in a way where we can remain healthy and happy instead of sick and miserable.

My ulcerative colitis does limit me: I have had to change my lifestyle in order to be able continue living. Stress must be avoided at all costs for stress causes me to go into flare up. I must keep up with my medications and realize that although they have some side effects I would be much worse off if I didn't take them. I must stay on a schedule and get the proper amount of sleep. I need to allow others help into my life: I have always been unhealthily independent and self reliant.

My physical limitations don't have to stop me from achieving my dreams... I just may need to find alternative methods to achieve them.

Bruises

My veins truly aren't made for needles.. The nurses always cringe and remark on how small my veins are. It's not surprising if the vein ends up collapsing on the first try and we end up having to gouge me again. The worst part is I always get immense bruises afterwords... I wince just thinking about how many people see me and assume, "That poor, pale drug addict." :(

Trust me, if I had a choice in all this, I would never let a needle within 15 feet of me...

When dealing with a disease such as Ulcerative Colitis, one of the most common forms of treatment is Prednisone. Prednisone is particularly effective as an Immunosuppressant and affects virtually all of the immune system. It can, therefore, be used as treatment for Autoimmune Diseases, Inflammatory Diseases (severe Asthma, severe Allergies, Angioedema episodes, severe Poison Ivy, Ulcerative Colitis, Rheumatoid Arthritis, Bell's Palsy, Crohn's disease, Pemphigus, Uveitis and various kidney diseases including Nephrotic syndrome, Mononucleosis and to prevent and treat rejection in organ transplants. Prednisone has also been used in the treatment of Migraine Headaches, Cluster Headaches and for Aphthous ulcer ("Cankersore") outbreaks.

Steroids may be the most difficult medication to tolerate since there are many side-effects. Increased appetite, weight gain, acne, fluid retention, trembling, mood swings, and difficulty sleeping are common. Other side effects occur in patients who take steroids for long periods of time, particularly if high doses are used. These include diabetes, thinning of the skin, easy bruising, a "cushingoid" appearance (widening of the face and a hump in the back), thinning of the bones, body hair growth, cataracts, high blood pressure, stomach ulcers, avascular necrosis (a serious joint problem), and infections. Because of the risk of these side effects, most patients are tapered off of steroids as soon as possible.

I am currently in flare up and am on a 15 week regiment of 50mg of Prednisone (to be tapered down by 10 mg every two weeks). So let's just say I am covered with bruises, am easily over heated, and a tad moody so you probably wouldn't want to take me out to coffee any time soon... :)