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.

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.