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.

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.
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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.

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.

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?