Midsummer

Deep depression is an inevitability for any seriously affected IBD patient. However, a few things have helped me cope with my own:

1) Walking. This helps me burn off some steam, and I generally feel better afterward showering away the day's frustrations.

2) Vitamin D. Is supposed to help with mood anyway, but I have been taking a multivitamin. I feel like it's been helping with mood and energy overall.

3) People. I cannot stress this one enough. It's been my bad habit of pushing a lot of people away when my condition becomes worse, but I've spent some time with a lot of old friends this summer and it feels wonderful.

I've felt so much that I want to disappear because this hideous creature is not worthy of existing in this world, but Daniel has been tremendous in helping me through these darker periods. I can't imagine where I would be without that shoulder to cry on.

An update as for how everything is going though:

I was told I had one ovarian cyst on the left side, but I've been feeling dull pain on both sides that seems to be exacerbated by intense exercise. I haven't been on birth control pills for one month exactly, and I've noticed less pain the longer I am off of them. We'll see because I liked being on them. I don't want to cause a flare up from hormonal changes either, but I can't afford to pay the doctor's bill at the moment.

I'm looking for a job because I have been much, much better physically. I've applied to a lot of places and haven't had much luck so Arby's or McDonald's are serious prospects now. A job is a job right?

As for the Crohn's itself? I feel almost 100% normal. For anyone who has been with me (and I really mean with me) this past year and a half, 'normal' is almost unbelievable.
I'm taking pentasa, omeprazole, and weaning down on prednisone (back down to 10 mg a day!). I haven't taken the last four doses of my humira. I may be rolling the dice on this one so we'll see. I suppose it's that I'm trying to stockpile in case I can't find insurance that will cover it, and another part of it is that I'm still uncomfortable with taking more than two immunosuppressants.

In any case, that's what is going on the up to the first half of July. For the rest of the summer it will be doctor's appointments, studying for chemistry and math for the upcoming Fall semester, searching for insurance and a job, and hopefully being more of a social creature than this past year has allowed me to be.

Food up to now:

Blue Diamond Pecan Thins
Strawberry Jello
Chocolate Soymilk
Scrambled Eggs in Olive Oil

That is about it.

I do cheat sometimes still, but I think most of us do. Right?

Being sick doesn't mean you're dead

Even when things feel perfectly fine, or so I've learned this past week, you cannot eat everything lying outside the area of spicy or acidic food (because these two are obviously forbidden, yes?).

My poison?

A bowl of blueberries sans skin and strawberries.

This is the first time I have vomited from what I believe to be my second obstruction this month. Fun times but, you know, not really.

COBRA took effect so I am insured for the time being. This taken into account I had an ultrasound done. Results are pending for now. I'm thinking I'll be fine as long as I stick to soft foods and avoid certain fiber e.g. fresh fruit, like the plague.

I haven't taken my omeprazole for two weeks now and am feeling the usual heart burn and tightness in the chest. I am wondering if this has anything to do with the last string of medical adventures. I plan on picking it up today to see what differences are made.
I also have neglected to take Loestrin for the past week. I think that this kind of neglect is always a mistake and am planning to get this today as well. You may as well take advantage of what your insurance will cover at the time.

That is the end of this month in any case. Did I learn anything new?

Stop stressing so much about the things you can't control and get on with the life that you can. There is a life out there waiting for you.

For those interested, a topic I was asking about recently:

Lifestyle Questions

Emergency Trips

I had planned on making this bimonthly, but a few things have happened in the past few days I feel are worth writing about.

My family held a yard sale to help raise funds for me, Daniel, and my brother. We three live together, share bills, and have had a rough go of it this past couple of months.
Things went well, we made $200.00, and ended the day eating chicken with sweet potato squares and green beans, and then helping my aunt with her Microbiology lab work.
I think dinner is where things began to go wrong. I don't normally eat sweet potatoes or green beans, nor breaded chicken, but alas I was hungry and gave in.

I started feeling some abdominal pain that night and thought 'gee, this couldn't be like the obstruction I had last year. It doesn't feel nearly as bad.'
By morning, dear god, it did.
I was not passing anything either way but felt extremely nauseated and was experiencing those pains that feel (so many women with Crohn's who have given birth say) worse than giving birth. I have had labor pains before, and this is definitely far worse. Obstruction pain generally spans from below your navel to your esophagus.

I thought I could weather it out like last time but to no avail. Daniel got me to the emergency room in the morning where they asked the usual questions, found me a bed as soon as possible, and changed me into my gown; they're super comfortable by the way.
I was given fluids and a large dose of morphine. I started laughing for no reason within a few minutes, told Daniel..well...I can't remember, but it was mostly chattering and I fell asleep immediately afterward. I woke up later and had a CT scan. Prepare yourself if you ever hear you have to have one. Use the bathroom first for your own sake if it is the first time. You will taste metal and feel like things have happened with your bladder that probably didn't. Better safe than sorry though yes?

In any case, useless information aside, the diagnosis was a possible obstruction and/or ruptured ovarian cyst. There was a lot of free floating fluid in my abdomen, but they are still not sure exactly what it is.

I went in to the hospital again today at 7:30 am to have an ultrasound done just to rule a few things out, got into the admitting office where they perform all of the paperwork duties, and found out my insurance had run out.

SURPRISE!!!

Not the one I wanted.

They said since I was no longer covered that they would take 45% off of the bill bringing it down to approximately $175.00. I do not have that. This is basically me at the moment.

I was scheduled to visit my GI directly after the ultrasound, but could not in light of the insurance situation. I called my mother, god bless her, who spoke with my father (communications are strained between us) and worked things out. He has sent in papers for COBRA so this should last until I find my own insurance to cover what I need. Given this, I was able to go in and see my GI anyway. They said it should be okay if the COBRA papers were sent in, thank goodness.

He gave me the news about the possible obstruction and ovarian cyst, gave me orders to stay on a soft diet, increase my prednisone dose to 20 mg and slowly taper to help prevent any inflammation or further obstruction, and, to my amusement anyway, started computer talk with Daniel. I am just glad that my doctor is a human being who can bring himself to the level of the patient. I cannot believe how fortunate I am to have someone who would let me in after the insurance reached the end of its term and still really seem to care about what is going on with me.

In any case, that is where I stand. I have no more omeprazole at the moment so I need to figure out how to refill before tomorrow, am on a soft diet, semi bed rest, and plan on studying, cooking, etc. for the rest of the evening.

Tomorrow begins my ever aggressive search for insurance, a job, and some sense of peace.

One thing this has made come to mind is that I have been disappointed in myself for all the wrong reasons. We are raised to believe we're meant to be fine physically and mentally. We grow up attempting to live up to what I believe are nearly impossible standards in today's modern, ever sicker world. If you can go through life without being diagnosed with a serious illness then I am very happy for you. But for the rest of us, it's difficult sometimes to find understanding that we're not like you.

I felt lesser because I became ill, but I realized that I cannot be happy until I accept that this is what I am; I will always be this. And I felt just that much more at peace. I think this is the beginning of self acceptance and some form of love for who I am.

Life is going to be so difficult sometimes because of what has happened, but I believe I can make it. My current goals are getting my major in Environmental and Soil Sciences, using that to enter law school so I can work in environmental law, studying abroad in Japan, various locations in Europe, and hopefully Australia's Golden Coast next year for observation of coral reefs and their relation to environmental practices in our world's modern business.

Among other things. I have so many dreams, but I don't think they would ever have been anymore possible without the realization that I am sick, and that this is okay. I can still live, but just a little bit more cautiously than the average person.

One area many patients with an autoimmune disease should be well versed in but often are wholly unprepared: health insurance.

As any of us know, it's difficult if not impossible to be accepted by any insurance company with such expensive conditions. The event that my father be hired by Westar was fortuitous if anything at all because it provided health insurance not two months before I fell so ill and in dire need of medical care. Without this insurance I'm not sure I would have gone into the hospital until I was past reasonable healing.

However, his employment with them has ended and so too soon will my health insurance. That being said, I am currently looking into all options. This includes:

COBRA--The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. Qualified individuals may be required to pay the entire premium for coverage up to 102 percent of the cost to the plan.

This is useful, but it only lasts for a limited amount of time and costs thousands of dollars every year. It is the best option so far until the rest (possibly) come to work out. The only way I will receive this is if my father signs up for it, but he has not given a definitive 'yes' or 'no.' I am hoping he realizes how much I need this, but family issues and dealing with a chronic illness will have to wait until another entry.

Medicaid--TennCare is a government-operated medical assistance program designed for people who are eligible for Medicaid, as well as for some children who do not have insurance. TennCare is a Medicaid waiver, or demonstration, program. Its purpose is to demonstrate that the use of managed-care principles can generate sufficient savings to enable the state to cover more than Medicaid eligible people.TennCare provides health coverage for 1.2 million low-income children, pregnant women and disabled Tennesseans with an annual budget of $7 billion.

In my case medicaid is Tenncare given my current location of residence. I sent in papers today requesting information to get the ball rolling on this since it can take up to three months to reach a decision.

Employment during college: Starbucks offers health insurance to its employees. I am waiting to see if any positions open in any stores, but no such luck yet. I also applied to US Cellular, but I believe the best benefit they offer at the moment is tuition reimbursement; rather irrelevant to this.

Student Health Insurance through University:This is a difficult case. I would advise any incoming freshmen to take advantage of their university's health insurance program because you never, NEVER, know what will happen to you. I entered UT very healthy and left my Spring 08 semester severely ill. My school's program is amazing from what I can tell so I will be signing up soon. I was mistaken in that I thought the 'pre-existing conditions' clause would prevent me from being able to obtain coverage due to my condition. However, if you have had coverage in the last 12 months you are still eligible for coverage. I am going in soon to speak with someone about my options so I will update next entry.

*In the event you/I cannot receive medical coverage and fall too ill to work*

Disability: This is extremely difficult to get. There are many people who desperately need it, apply, and are continually rejected. We really have to fight to receive it, but it is an option and should be explored nonetheless.

Consulting your state's Department of Human Services: I have been in the process of doing this lately. I am not sure how well it work, how soon a decision will be reached, and what else I will need to provide concerning annual expenses.
It is supposed to provide financial assistance and/or food stamps for those of us who are at a severe financial disadvantage.
So far I have had to provide proof of income (or unemployment in my case), a copy of water and electricity bills, a statement signed by my father about monthly support, and a copy of my most recent bank statement. I sent this out today and will keep records of how this option progresses.


All I can say at this point is that we'll see.

Happy Anniversary

This time last year I was sitting in my boyfriend's black bowl chair reading Cormac McCarthy's 'The Road.' We had just moved into an apartment together, the first time either of us lived with a significant other, and had nothing to fill it with but the few items a college student can usually afford.
You normally begin to make your living quarters your own personal sanctuary as soon as you move in, but our time was spent, respectively, with me sleeping and him working. We did what we could to make our apartment home, but I would resent it for many months to come as a place that felt more like a prison than a place to live.

For several months prior I was sick with symptoms ranging from fatigue and stomach cramps at the beginning to severe blood loss and inability to eat in the end. We had our theories as to what it could be, but the diagnosis I thought would be the worst turned out to be exactly what I had: Crohn's disease-An autoimmune disease where your intestines become inflamed and ulcerated.
And to specify, autoimmune diseases are those whose nature is that your body's immune system is called to act against foreign invaders but instead attacks the very body it was meant to protect.

I went in for testing by having a colonoscopy and endoscopy done in tandem. The preparation for it the night before was the worst part as any patient undergoing these procedures could attest to. I was notified of the results via telephone one week later and that was that. I started treatment with a drug more commonly used for colitis called Asacol and 40 mg of a steroid medication initially prescribed to virtually everyone in my situation called Prednisone.

The first two months of life after diagnosis consisted of menial tasks like keeping the apartment clean and walking to rebuild my strength. At that point I weighed around 105 pounds from the long period prior of being able to consume nothing but chicken broth with the occasional noodle and water. I started experimenting with different things afterward, but my diet consisted mainly of Pamela's Pecan Shortbread cookies sans gluten, pomegranate juice, and hamburger patties with cheese, onions, and ketchup wrapped in lettuce. The meat was available courtesy of my Aunt Yvonne and her cow, George.
Things seemed to be moving in a positive direction, but in retrospect this was due primarily to the fact that I was on such a high dose of prednisone. I made too many mistakes with regards to what I ate including brownies, hamburger helper, and the aforementioned food items.

I can remember in particular one of the last visits with my doctor before summer began to show the ugly side of this disease again. I told him that I felt perfectly fine in spite of the fact that I was still losing blood and that my pills were leaving my body without having completely dissolved. I truly believed things would be better and that I would not feel sick again for a very long time. However, his response was to be cautious because these signs indicated that inflammation was still not under control and that they could easily take a turn for the worst. The last thing he said to me before I left?
'And don't, whatever you do, get pregnant.'

Two weeks later, after being late and experiencing exacerbated symptoms, I took a pregnancy test and braced myself for the nine months to follow.

I developed a fistula, began to lose more blood, and felt the familiar symptoms gradually return again.
I made plans to abort the child and keep the whole affair a secret, but life works, without fail, in ways you don't expect.

I admitted the condition to my mother and we planned together for her to take the baby when it was born as her own. What was once a rejected mass of tissue became a child growing inside of me that I learned to love dearly. But again, life works contrary to your expectations.

We could not keep the symptoms under control, and a vicious cycle began where my illness threatened my pregnancy, and my pregnancy worsened my illness.
All of this culminated in a trip to the emergency room where I had surgery for a resulting ectopic pregnancy. I had lost my baby.
I stayed in the hospital for a week until they were convinced I could walk a few feet on my own. I was on constant antibiotics, fluids, and steroids all intravenously for the duration of my stay. Thankfully, these healed and closed my fistula. The only thing left to contend with was healing from abdominal surgery and a Crohn's flare.
I am left to this day with an all too visible scar across the bottom of my abdomen, a constant reminder of what this disease does best: It is the greatest thief I have ever known. But, as future entries will hopefully show, it is also the greatest thing that has ever happened to me.

The month following was still more of what I had done since I moved into this apartment. I slept and woke only to eat what I could keep down or take my medicine.
I can say in all honesty that so many of my first months here were spent sleeping some days as many as 22 hours.
Don't ever take having the ability to keep your eyes open for granted.
The constant darkness and stale air only served to dampen my spirits. These were some of the lowest times of my life, and I truly began to despise apartment number 9060, my big red couch, and the perpetual hum of the air conditioner.

I had a small two week reprieve where symptoms were mild, but I give credit for that to my supply of percocet and, yet again, increased dose of steroids.
After that, my symptoms became worse than they ever had before. I was emptying bowl after bowl of blood up to (in all seriousness) ten times every hour I was awake. I lost so much blood I could not walk, let alone stand, without my legs collapsing beneath me. I weighed 97 pounds and was literally wasting away. I'm still not sure I would have made it had I not had my supply of ensure; I could not even drink water.
This episode ended in yet another weeklong stay in the hospital with still more 24/7 intravenous steroids and fluid.
I left only after they were sure I could eat and was capable of walking with at least a cane. At this point, my doctor put me on Alinia, Pentasa, Prednisone, Bentyl, and Ultracet. Symptoms were worse on them initially, but they gradually came to help me feel better.
Many weeks were spent consuming nothing but ensure and boost shakes, chewable calcium tablets, kefir, and the obligatory water. I was doing everything I could to get better with one goal in mind: return to school.
The excess financial aid it offered through scholarships and grants was the only way I knew I would be able to pay for anything in the months to come so, healthy or not, I had to go.
I was excited regardless though. I needed something to keep me busy, and walking from class to class helped to rebuild my strength in spite of how close together they were.
It was difficult, but I managed to pull through and maintain a good gpa.
Life had started to become a little bit brighter by then, I was seeing a home forming, and my relationship with Daniel was maturing (how could it not in this kind of situation?).
We went through the motions, started making payments on a car, decided we were engaged, and planned for a future.

The trials to come were those any normal people go through. We had a tough time with school after Christmas break, went through relationship troubles, and nearly separated permanently.
What I've learned from those events is that you will have to separate and experience something else if you want your relationship to survive. I'm still learning to cope with everything that happened, but I'm slowly finding peace and consolation. We could not have survived if another girl had not been there, and what we have now is stronger than anything I've ever felt with another human being.

The stress caused by all of this resulted in setbacks concerning my Crohn's symptoms. Ask any Crohn's patient and they will tell you the number one cause of symptoms flaring up again is emotional stress.
But, as it is now, I am doing well. I'm currently taking pentasa, prednisone, humira, omeprazole, bentyl as needed, Align probiotics, and a prenatal multivitamin (no, I am not pregnant).

Current worries now are bringing our grades back up this coming Fall semester, me finding a job, finding a cheaper place to live, finding a cheaper car, and staying healthy.

I feel almost completely better again. The point of this blog after all is said here is to keep track of how this disease progresses, and otherwise hopefully, along with my life. I'm in the process of trying many new kinds of diets and am taking steps to keep stress under control to prevent a recurrence of symptoms.

The real thing starts tomorrow I suppose.

And with that, goodnight.