Friday, November 27, 2009

Fall/Winter Update

The purpose of this post is mainly to keep records of medical changes, but I'm hoping it may help anyone who is experiencing similar problems.

I was diagnosed on November 20 with Interstitial Cystitis. I had been having problems indicative of a chronic sort of UTI or kidney stones sans vomiting or fever. Every time I brought this up I was prescribed antibiotics with or without anyone sending for a urinalysis, and I had no infection several times. The whole affair was frustrating, to say the least, because this had been going on for months, and it got so bad sometimes I could not leave the bathroom; I was stuck in there for four hours at one point.

It culminated in a trip to the ER where I was yet again prescribed antibiotics in spite of the fact that my urinalysis came back negative for any infection. I was stuck at home taking dose after dose of over-the-counter medication like Cystex or AZO, and all I can remember doing is breaking down several times. Sleep only came when my body couldn't take being awake anymore, I could not lie down because it only exacerbated symptoms, and the stress from lack of sleep seriously impaired my ability to function normally. There were days going to class seemed pointless because I was in the restroom for nearly half the class itself.

This whole ordeal created a lot of tension between Daniel and I, but he has been extremely patient throughout the whole thing, and has been so sweet in running to the drug store or calling the doctor when I just couldn't take it anymore. It's because of him I got the referral from my GI to the urologist (and just in time since we had a four hour flight the day after my appointment).

Dr. L we'll call him, listened to what I had to say, took note of the fact that I had no infection present in my test results from my last urinalysis, and did the diagnostic procedure only ten minutes after our initial meeting.
The procedure itself is not something I will ever do again if I can help it. It involves inserting a lighted scope through the urethra, past the sphincter muscle, and into the bladder to observe whether or not there is any irritation or inflammation. They also fill your bladder with fluid to test how sensitive to liquid it is. That is, if you feel the same horrible symptoms you normally do from this problem as your bladder is filled then you know something is wrong.

In my case, my bladder has low capacity for storing liquids, large irritated veins were visible on the bladder wall, and things looked raw.

I was told it is IC or Painful Bladder Syndrome, and I was prescribed Elmiron for long term treatment along with methylphen for my "as needed" quick fix. I've read that this is often diagnosed in people with IBS or other IB[insert what you will] diseases. When the doctor described to me what IC was it sounded exactly like Crohn's except that you describe the bladder wall instead of the intestinal wall.

My main problems at the moment are that the diet to help IC is in direct conflict with the diet that helps my IBD, and the medicine, without insurance, is priced at slightly over $500.00. I have insurance at the moment thankfully, but I'm not sure what to do after it runs out.

Cranberry juice does not help, and it may actually make it worse. Other home remedies for UTI problems can exacerbate IC symptoms.

But we'll deal with it when it comes. I'm happy to have a diagnosis for now, and all I can concentrate on now is school, getting into a neurologist, and going to see a psychiatrist. Seeing shadows and avoiding the closet is creating problems.

Sunday, October 18, 2009

One of Our Greatest Obstacles

Found on PostSecret

I think this is the first step, and many of us never get past it. Acceptance of the human condition is difficult enough without a lifelong illness, but this is difficult on a completely different level.
I'm wishing all of us, not just Crohn's patients, the best of luck in finding our place.

Thursday, October 15, 2009

October 15-pre Midterm stress, post 'surgery' depression

I'll leave just a short update here:

Insurance: I've checked with a lot of fellow Crohnies, and the verdict is? You can't hope to get insurance unless it's under a spouse/parent's plan or if you work for a company that will cover you. My father is looking into extending the COBRA until we can figure something out. My main concern is being able to get through college. I don't want to drop out because I'm spending all my time in the hospital or bleeding in my bathroom. I have plans!
Now, there is medicare, but it doesn't cover any of my medication, and it doesn't cover my doctor. Sounds picky? Here is the thing, what medication works and for who is completely up to the body of the individual. Pentasa works for me, but it may do nothing for someone else. I've been on a lot of different kinds, and I've tried many different things before finding what is right for me. If it took you a year to get out of bed would you want to mess with the formula?
Also, I have an amazing doctor. Not 'amazing' how everyone throws the word around,'That shade of pink on your lips is AMAZING! My apartment is AMAZING!' No, he is a really wonderful doctor. Anyone who goes to a specialist knows that finding a good doctor is rather difficult, and that once you find him/her you do not want to let them go. It's like stumbling across a gold mine. This is my life I am dealing with here.

Health-The cysts seem to have disappeared. I went to a clinic to get some things done, had one of the worst days of my life, and got sent home with some hydrocodone and Loestrin (yes!). Crohn's is on the fence right now. There is some sort of bladder/reproductive organ situation though. It almost seems like interstitial cystitis or perpetual infection, but I can't get into anyone's office. I called everyone at Parkwest, and I called my clinic, but neither were available. Those aside, there are some stomach problems, but nothing that keeps me from leaving the house. Completely.

School-Going off of that last sentence, I have class from 9-1 every Monday, Wednesday, and Friday, and some mornings I have a really hard time getting up. The stomach pain gets that bad. It's either/or a combination of the Crohn's or post weekend procedure. We're not sure yet. I need to call for a follow-up, and I think I have a GI appointment sometime soon. It's just slightly difficult to get up and down stairs, and my first class is on the third floor, no elevator.

It sounds like quite a bit of whining, but I do have a lot to be grateful for right now.

1. Daniel proposed to me. This is the second time. I won't go into details about what happened to the first, but suffice to say I learned what true hatred is, and its name is Leather Mrause (see what I did there? >_>). Witches aside, I love Daniel. I think I might die if he weren't here.

2. I'm not pregnant. Take the two theatre masks, cut them in half, put them together, and that is my face on this particular subject.

3. School is going much better than it did last semester. It's a lot of work, and I'm still worried about making the grade, but I think everything will be all right. I have some really wonderful teachers with equally interesting classes.

4. I can eat. Enough said.

5. I'm learning to live away from the shaky ground that is friends who "care." I deleted them from my internet social settings, and am concentrating on keeping contact with the people who are still there in spite of everything. Letting go never ceases to be so liberating.

That's it for now. It's a little bit longer than I intended, but it could go on for much longer if I hadn't made this more public earlier.

Sunday, September 27, 2009

Short Update

The cysts are getting worse, but I'll be going in October 12 to a new obgyn to see what we can do. Birth control pills are supposed to help as far as treatment goes so I will try that and post the results here. I would like to avoid surgery if possible.

School has been extremely busy still, and I have missed three classes. This is not something I'm proud of, but I'll work around it. I've noticed that some teachers are quick to suggest dropping their class at this number of absences, but I think perhaps people should have a little more faith in their students. Let the overall grade reflect the student's performance. They are all decent instructors though, and I understand where they are coming from. Time will tell what the 'right' thing to do was, but I won't give up on my classes. I'm actually doing really well so far.

Some symptoms that are slightly worrisome:

*Constant, extreme fatigue. I am still tired after 12 hours of sleep.
*Severe abdominal pain from the cysts when I sit up to quickly or sometimes when I simply try to walk.
*Very small appetite. Anything sweet is simply repulsive to me right now, and that is saying quite a bit since I normally have a very large sweet tooth.
*Nauseated too often.

A lot of my other side effects would suggest pregnancy (I am not), but a cyst produces a lot of the same effects. Just something to keep in mind for any women exhibiting the same sort of symptoms.

I'll find a way around these though. Daniel and I have tickets to go see the Silversun Pickups on Wednesday, and I have no intention of missing any more classes regardless of how bad I feel. This is more so to prove my point that there is a difference between myself and people who skip because they just don't want to go. I'd like to keep my grades up anyway.

I changed my major as well. No longer Microbiology but Asian Studies with a minor in Japanese and Linguistics, and I may possibly fit Chinese in there (or save it for grad school). Oddly enough, I am doing the same amount of work in History and Literature classes that I was in Biology, Chemistry, and Math. That's all right though. I enjoy writing and close analysis reading.

It's not impossible to get through school with an illness.

Friday, September 11, 2009

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 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.

Tuesday, September 1, 2009

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..

Thursday, August 6, 2009

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.

Saturday, July 18, 2009


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?

Saturday, June 27, 2009

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

Tuesday, June 9, 2009

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.


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.

Thursday, June 4, 2009

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.

Wednesday, May 27, 2009

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.