End of Summer and its Glorious Sunsets

School has been extremely busy, but I am enjoying it very, very much.
I'm taking American Literature-Colonial to the Present, English Literature-Wordsworth to the present, Middle Eastern History, and Studies in Asian History-Rise and Fall of the Ottoman Empire.

I changed my major once again, but I think this is it! Asian Studies with a minor in Linguistics and Japanese and maybe some classes in Chinese or Russian. My ultimate goal is still law school, but right now I want to concentrate on doing well and graduating within the next three years. So yes, I will graduate about one year late, but I can't regret it because I've learned so much from UT's classes. It may not be my favorite place, but I have benefited greatly academically speaking.

It's nice to be in higher level classes since you generally deal with people who are as serious about academic success as yourself. I've had to do two presentations already, but it keeps you on your toes. It really helps you open up in front of other people, and it helps you to take part in discussion--something I never did like to do quite like now. This is also something that can carry over into normal social interaction, and I have noticed a difference. Opening up after everything has been difficult...people still cause so much grief because they simply don't understand.

The only downside to this semester is that swine flu has broken out. Some people have even bragged about coming to school with it if you can believe that. I wore a mask last class, but I'm uneasy about the looks of ridicule I get. Ridicule can be much more painful than illness..even if illness kills you. Why is pride so inclined to make us stupid?

I went to Earth Fare the other day and found some pretty good food items. Namely, spinach, gluten free asiago dressing, olives stuffed with feta (I could only eat a few as they turned out to be spicy from the red peppers in the olive oil), and gluten free spinach pasta.
That was really just a segue to this recipe I created tonight. Super delicious:

*Gluten free spinach pasta

*sauce/toppings/whatever you'd like to call it:
*onions sauteed in olive oil and minced garlic
*sea salt
*smoked Gouda
*fresh basil--I love having herbs growing on my porch!

Mix the two together and add shredded Parmesan.

Needless to say, I enjoyed dinner tonight. Not simply because I can't really eat heavily during the week--I get up early so eating the day before makes it difficult to get up--but because it was really, really good! Even Daniel ate the other portion.
Normally I eat whole percent Fage yogurt with chopped peaches, but I have been cheating with Ghiradelli peanut butter chocolate squares. Divine just doesn't cover it after abstaining from sweets like this..

Also, a couple of things I am excited about now that I am feeling better! Well, and assuming I stay better long enough to attend:

*September 18-MMA cage fight-not really my thing, but a friend is one of the fighters so I am looking forward to it.
*September 30-Silversun Pickups
*October 31-Valarium or the Zoo
*November 3-Lacuna Coil
*November 10-Peaches (I am super excited about this, but it's the only one I don't have tickets for!)
*November 14-Two year anniversary! I know, I know...it isn't a long time, but we have been through a lot together so it means quite a bit to me. I'm still angry about ****bag...but you know, whatever. In spite of her role as 'easy escape from responsibility' he and I are still together. As for her excuses? Sorry, I remain a skeptic.
*December 27-10 years

The main things to worry about at the moment are getting through school with good grades, beginning to pay of my medical bills and interest on unsubsidized loan (yes, I applied for a small one) without going broke, and staying healthy e.g. Crohn's and not getting swine flu. The mental health is important as well so I need to go to the clinic on campus sometime soon.

Something to note: don't ever take counseling for granted. If you need help then for goodness sake get help.

An update is slightly overdue, and I willl give one soon. All I can say for now is that thing are changing, in a paradoxically static way, as they always do.

Don't let 'static' fool you though. I am very, very excited..

End of Summer

Well, I'll start off with a few things I know I should not have done recently:

1) Cancelled my GI appointment. In my defense, I didn't have the money. I would really like to inquire about B12 shots though because my energy levels prefer to decrease rather than vice versa.

2) Missed my Department of Human Services appointment. The case worker called early in the morning in spite of my request for any time except that. Daniel picked up, assumed it was a bill collector, and didn't find out who it was until the very end of the conversation i.e. after I supposedly was not available. I really need to get this rescheduled and finished if I want to get the ball rolling on Tenncare. I don't know how long my COBRA coverage will last.

3) Partaken of the brownies I made last night. They were so good, dear lord..

With those out of the way, I would like to say I've made great progress as of late, and I'm very pleased with having begun living a semi-normal life again.

I've been walking for at least half an hour every evening around my apartment complex, resumed ballet practice so that I can start at K studio in September for adult classes, tentatively got a job at Joann, and am rearranging the apartment (no, not by myself) so that it won't be so closed off. I finally have my book shelf in the living room!

The ballet stretches have given me an idea of the effects of my medication. Namely, prednisone. Making your bones bend in every direction they should not is a bit more difficult after a year on steroids, but it feels wonderful to be active again. I do miss dancing..
One caveat: Always listen to your body. If you feel pain that isn't normally there during exercise and stretching then stop. You will regret it otherwise.

I notice that when I overdo things in that respect that my stomach becomes more active. I don't enjoy the extra cramps.

I've been cooking more lately as well. I made onion soup the other day that was actually quite good, but I would still prefer it with meat. All I used this time was:

4 medium onions
Olive oil to sauté them until brown
Chicken and beef broth
Garlic powder
Sea salt

It's fairly safe from an SCD standpoint. Next time however I wouldn't mind using a real garlic clove, chicken, and possibly zucchini.

The croutons were all right as well. I used my gluten free tapioca bread and olive oil. Daniel brought home some really wonderful cheddar that had been aged for a while, but it still didn't fix the fact that the bread I used is not the right kind. I might just cook the cheddar by itself until it forms a crunchy layer. I know that many people use this as a way to make flour free tortilla shells.

That is about it for now. We're all waiting for school to start, for our university aid to come in, and for a few answers that really can't come without time and patience.

I haven't taken my humira in two and a half months, am still off of loestrin birth control, and am down to 5 mg prednisone. I'm really hoping that I am not steroid dependent, but we won't know until I am completely weaned off of it; a very important reason to be careful with my diet and not eat horrible albeit tasty things like brownies.

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.