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Tuesday, September 29, 2009

Kicking IC to the Curb

I know, I know. It's all I've been blogging about lately, but this has been the center of Tyson and my life right now. I promise I have something different to add at the end of this blog. Grab yourself a cold one, because this is going to be long. I have A LOT to catch everyone up on.

Anyways, I just wanted to give everyone an update. Since my procedure, I've been SLOOOOOOOOOOOOOOOOOOOWWWWLY, getting slightly better each day. It's REALLY gradual. Actually, after my hydro/cysto procedure, I accumulated one extra symptom and that was a very tender and distended lower abdomen. I basically will look like I'm 3 months pregnant, and I CAN'T suck in. It's TOO TOO TOO painful. It's just too painful, period. My belly is so distended that I feel like I'm going to burst and it hurts. From what I researched and what my doctor has told me, it's part of an inflammation process. My bladder is inflammed, so fluid fills my tissues to protect my bladder; therefore, I have a distended tummy....ta dah! I think the procedure irritated my bladder a little bit more, and just like any procedure, you're going to be a little sore or out of whack for a little while. That's my theory. This is my very first procedure ever in my life.

Well, last week Tyson and I went for my follow up appointment with Dr. Corey (my new and wonderful urologist). Tyson and I were sitting in the room, and a woman walks in. My heart dropped because she definitely didn't look like any Dr. Corey. I wanted MY doctor. I guess she saw the disappointment in my face so she quickly said, "Hi, I'm Kim, and I'm Dr. Corey's nurse practitioner. He'll be right in in just a sec." I was relieved, and also relieved that she was a woman. I was thinking to myself, "A woman in this practice??? THANK GOD!!!!" She then told me that Dr. Corey looked in my bladder, and it's officially Interstitial Cystitis. She then asked me if I knew what it was. I told her I do, but I wanted a doctor's version on it. Little did she know that I have done TONS AND TONS of THOROUGH research for 2 straight months that even I could possibly diagnose someone with IC (not really, but you know what I mean) and I was sort of testing her to see how well versed she was in the disease (since it's not widely known about). So, the Nurse Practitioner went into detailed information about IC and blew me away. She mentioned everything I already knew AND even elaborated more on it. She spent a good 20-30 minutes with Tyson and I and answered ALL of our questions. She DID NOT act like she was in a rush (like all doctors do), and was even trying to make sure I didn't have any other questions. I was on cloud nine. This was too good to be true to have a doctor spend THIS much time with us. If I started crying, she was there comforting me and handing me tissues. Again, she's a woman! Thank goodness!

As I described all of my current symptoms still existing, and what new symptoms I've occurred over the past 2 months, she then said, "You're on 200mg of Elmiron twice daily, right?" I exclaimed, "Noooo....I'm only on 100mg twice daily, and my old Uro refused to up my dosage to the recommended starting dosage by the FDA (100mg 3 times daily) after I had asked him to put me on the recommended dosage." She looked puzzled, and said, "Well, since you've not had any side effects, I want you to start taking 200mg twice daily." I said, "THANK GOD! I was going to ask you if we can up it so we can kick this healing process into high gear." Not only was I happy she upped my dosage, I was also happy she upped it 100mg over the recommended starting dosage. Some people have to take 900mg. They are obviously more severe cases. I don't know how those people even live! My moderate case is excrutiating enough, and I'm not being a drama queen either! The reason why I wanted my dosage to be high is because this medicine takes up to 6 months to a year to even work.....if it works. Only about 2-5% of each pill makes it to the bladder to coat it, so the normal bladder lining cells can piece back my bladder lining that has been damaged. So much of the med gets lost in digestion. That's why I wanted to take more. She was then going to prescribe me Atarax because it is thought that IC creates histamines in the bladder, where the bladder is basically attacking itself (on accident) because it's trying to protect me. Well, thank goodness for Tyson because he mentioned how all in my pelvic region I'm experiencing debilitating pain almost to the point where I can't walk at all, and I can barely live day to day. She then said that my IC must be causing me more of a nerve issue so she prescribed me Elavil instead. What I've researched on the nerve issue is that my bladder lining is basically worn down, has holes, and is damaged. Urine is already acidic no matter what. When my bladder starts to fill with urine, the acidity of it is touching my bladder nerves because my protective bladder lining is almost non-existent. This is what is causing me so much pain in my pelvic region because all of the nerves are linked. In a normal bladder, you have a thick, protective bladder lining (GAG layer/epithelium) that blocks the acidic urine from touching your bladder nerves. She then took me off the Enablex (overactive bladder med) because I told her it has only made a dent in relieving any symptoms. Now I'm on Urelle which is a cocktail of an antispasmodic (keeping my bladder from going into spasms), something for pain, etc. etc. etc. After all of these newly prescribed meds, that leads me to the final piece of this blog......Oh..and by the way, Dr. Corey did come in to finalize any question I may have had. I barely had any because the nurse practitioner was SO incredible. He even boasted about her. Anyways, back to how the new meds are working for me.............

The first night I took my Elavil, I noticed a decrease in my pain to where my pain was more mild-moderate instead of severe. It even zonks me out so I sleep like a baby and feel really rested. I have to take this at night for this reason. It caused me to be in a fog the next day, but after a week on it, my body has adjusted. All I can say is that I usually can't wait for 7-7:30 to roll around because that's when I get to take my Elavil, and I'm feeling almost pain free. It's a non addicting drug by the way if you're worried. I inquired about Vicodin to the nurse practitioner, but she said even though that will help, it's not the best med to take care of my issue. Plus, it's an addicting drug. Thank goodness she prescribed Elavil.....mmmmm...I love me some Elavil! I think the Urelle is even working better than the Enablex, plus, it's an extra added bonus to pain management. Also, I don't know if it's the Elavil, Urelle, or me healing up from the procedure, or a combo of ALL of this, but ever since I've upped my Elmiron, I've noticed a significant difference in my symtoms, and it's only been a month since I've even started Elmiron. Even when I was on that lowest dosage, I noticed a SLIGHT SLIGHT SLIGHT difference, but not enough. I think since I was put on it one month after my symptoms had started, it has been more effective for me. For others, I think that low percentage of it working is from people who don't get diagnosed or put on it about 6 months AFTER their symptoms have started. Yes! People live like this for 6 months going from doctor to doctor until finally one diagnoses them! That's CRAZY to me for someone to live like this for 6 months until they can get diagnosed!!!! Some doctors need to be ashamed of themselves. Just because we don't look sick on the outside, doesn't mean our bodies are screaming on the inside. I will tell you the pain and discomfort is SO bad that I think, after dealing with this, I will be able to give birth without an epidural. NOT KIDDING EITHER!!!!!!! Thank goodness I was so persistent and probably the biggest pain in all of my doctor's rear ends, but, hey! I got put on the Elmiron quickly so I have a better chance of it working, and quickly too!

I am sitting here today, typing this blog after being on Elmiron for only 1 month and then all of my new meds for only a week, and I can tell you that today was the first day I felt 85% better since IC attacked me two months ago. I can only pray pray pray it just keeps getting better from here, and I don't take a nose dive.....KNOCK ON WOOD!!!!!! I forgot to mention that the Nurse Practitioner told me to have a gluten free diet for now because there's now research that says gluten irritates an IC bladder. So, not only am I on the already restricted IC diet, I also have to be gluten free which basically cuts the already complicated IC diet in half. It stinks, but I have heard and read success stories that once someone has gotten their bladder to heal up, they've been able to add more foods to their diet. I've changed mine up a tiny bit. I am now eating gluten free brown rice tortillas which are actually pretty good. I'm still eating chicken, and I've added zucchini to my diet. I've taken out potatoes because about 4 days ago, I thought I figure out that potatoes might be a problem food for me (even though it says it's IC safe on the diet). Potatoes have potassium in it, and our IC bladders are sensitive to potassium. So I've cut that and replaced it with organic brown jasmine rice which is actually delicious. I've added romain lettuce and some organic eggs. And....READ THIS.....did you know even your water can be acidic!!!!??? I JUST figured out today that I think the water I was drinking was hurting me. I switched up my water (to another IC safe water-Fiji) and that's when my difference started yesterday. I decided to give my other water I've been drinking a test trial after school today. I don't know if it was me looking for it, but I felt sort of a twinge of my symptoms start to flare, so goodbye to that water. And, they even said this water I've been drinking was safe! But, I have been told and read that the IC diet is only a guideline, and I still can still flare from eating and IC safe food. It kind of stinks. It's all a guessing game.

So this is what's happening with me right now. I think I'm improving, and I'm PRAYING that this is me improving and it will only get better from here. I'm hoping for a speedy recovery and I can return to the life I lived pre IC. I have full faith that I will. In my heart, I know I will return to the life I lived pre IC. Again, thank you EVERYONE for all of the love and support. I can only hope that I'm educating everyone about this debilitating disease since it's not widely known like cancer. Why, I don't know because MILLIONS of people have this disease. But, some are suffering silently, or doctors can't seem to diagnose them quick enough. Please continue to pray for Tyson and me. I feel that all of your prayers are working.

Overall, Tyson and I are EXTREMELY happy with Dr. Corey, and especially his nurse practitioner....WOOHOO!!!! A two man team that is treating me, and one is a woman! I'm so happy. We both walked out of there feeling SO RELIEVED, and Tyson even admitted and apologized to me for not listening to me when I told him I felt iffy about my old Urologist. Dr. Corey and his nurse practitioner Kim have been my saving grace. They make me feel SO positive that I will be an IC success story and be completely asymptomatic.

Sunday, September 13, 2009

Officially Diagnosed

I warn anyone who is going to read this. This blog will contain some personal information, and possibly some gross information. At this point, I have no shame and want to educate everyone on this debilitating disease. So, if you're not too comfortable, I suggest not reading this blog. But, it won't be THAT bad.

Well, as many of you already know, I went in on Friday for a procedure where the my Urologist went to take a look up inside my bladder to look for signs of Interstitial Cystitis (IC). He found a sign. I apparently have hemmorages inside my bladder. Apparently, this is a sign of IC. My poor bladder walls are damaged/injured. For what ever cause, I have no clue. No one knows what causes IC. We did not discuss much information or treatments to start since I was considered "a little out of it," and I wouldn't remember. He wants to see me for a follow up appointment in 2 weeks. I guess that is when we will talk about all of this.

I've always had a feeling in the back of my mind when all of this first began back in July that it could be IC. I just had this gut feeling. Well, when I was officially diagnosed on Friday, my whole world came crumbling down even some more (even though I knew this was coming). Nothing is more devasting to hear that you're diagnosed with a disease that is incurable, no one knows what causes it, but there are treatments, but not all of them work. It's like a trial and error thing, and all treatments take a LONG TIME to see if they work. Basically, when I heard the words, "You have Interstitial Cystitis," all I heard in my head was, "Be prepared to feel constant discomfort and pain for a while until we can figure things out." I've already been in SO much discomfort for 2 months now. I don't know how much more I can take. I'm frightened and scared to death, and I'm always questioning, "What am I going to do?"

I can say that after 2 months of this, I am pretty much psychologically scarred. I mean, you would be if you were in CONSTANT chronic pain and discomfort and it's altering your life. I try not to let it, but unfortunately, this thing has such physical control over me, that even a push to try to get through it only makes it worse. I force myself out of bed and go to work, but by the end of the day, I'm squeezing my legs together so tightly while hurled over a piece of furniture crying in pain/discomfort and begging to God to take my illness away from me. It's quite depressing. I'm tired of crying in pain, discomfort, and the fact that I'm DESPERATE to get my body back to feeling normal so I can physically function (pain and discomfort free) again. Don't get me wrong. I'm not negative ALL of the time, but I do have many ups and downs. I TRY TRY TRY to remain positive and tell myself it will all go away, but it's so hard to when you wake up feeling the same way every day and there's no decrease in your symptoms. It's kind of hard to see the light at the end of the tunnel when you see absolutely no improvement for 2 months straight.

Which leads me to my next thing. It has been 3 weeks now since I've started the Elmiron and been on my strict diet. So far, I don't think I can tell much of a difference. Friday, I was so nauseated from the anesthesia that I threw up my first dose of the day. There's one pill down the toilet....literally. Post procedure, I was fine overall. Kind of sleepy, nauseated, but I didn't have that instant urge that some people were saying I would have when I woke up. Peeing for the first time after surgery hurt SO BAD. I felt like I was peeing shards of glass. Luckily, they gave me a little pill that eases it. It's been two days, and it doesn't hurt to pee as much. My symptoms are pretty much still the same....go figure. My current symptoms are:
Urgency
Frequency
Tightening/painful ache "down there," around urethra area, underside of buttocks, and in the crease of my left inner thigh. *This all hurts worse with walking and standing.*

There is a possibility that I have developed some pelvic floor dysfunction from this IC thing. My doctor told me that all of that painful/tightening ache I feel occurs in most IC patients. Great......another thing to worry about and treat. He said we can start treating this if this continues to be an issue. Well, it's been an issue for a month now, and I'm going to bring that up to him at my follow up.

Tyson has been as much of a trooper as he can be. This is NOT how I pictured our first year of marriage to be like. He tries to comfort me, but often gets frustrated when I seem negative about the situation. Like I said, I try to be positive, but no one will understand why I can easily fall into a negative state until they have experienced this for themselves. I WOULD NEVER wish this upon ANYONE.....EVER! Doctors/scientists/researchers...WHATEVER....have related the symptoms of IC to the pain and discomfort of end stage cancer. Fabulous..... Not....

Anyways, I'll continue to keep everyone posted. I'm sorry there has been no positive blogs or any blogs that have some variety. When it boils down to it, nothing new is going on. Again, I want to thank everyone for their thoughts and prayers and any help they can give me.

I pray that they find a cure for this thing REALLY soon. I wish I knew how to create more awareness of this very confusing bladder disease. More and more doctors, researchers, and scientists are becoming more familiar with the disease, so hopefully, the end to this pain is near.

Saturday, September 5, 2009

Trying Our Best

Sorry for the no post in a long time. Life has been REALLY busy and hectic for both Tyson and me. School is going okay for me. It would be a better experience if I wasn't so miserable. My students are great! The teaching part is fun! But......the OTHER things that a teacher's job entails......paperwork, testing students, basically doing 50 other jobs on TOP of trying to make sure your students are getting the necessary knowledge to pass the standardized test at the end of the school year is wearing me out, but more so because I'm trying to do it all while I'm so extrememly uncomfortable. I'm a VERY organized person, and all of this is causing me to get disorganized. I'M SO BUSY!!!!! I can't stay caught up, so I have to bring work home. :( I never wanted to be one of those teachers, but, unfortunately, I have to do it in order to keep up. What's really holding me back is my possible Interstitial Cystitis. Since I'm so uncomfortable, and can't move very fast right now, I'm getting behind. Some days I just want to crawl into a corner because I'm "hurting" (if that's what you want to call it) and I can barely teach. I get behind in my teaching. I don't know what to do. This is NOT the way I pictured my first year of teaching.

Tyson has been such a trooper at trying his best to take care of things that I can't take care of right now, while working his tail off as well. I feel so helpless, and I can barely do half of the things I used to because, at times, I can barely move without flaring something up. I feel so HORRIBLE to have to put everything on him right now. He's been helping me cook the only 4 things I can eat right now (yeah...you heard me right....that's a whole other long story in itself), helping me with the dogs, helping me around the apartment, etc., etc. This situation I'm in has really put a hold on our lives right now, and we're trying our best to get through this. We're both staying as positive as we can with this in knowing I WILL be normal again.

It's been two weeks since I've been on the Elmiron and I have noticed a decrease in the severity of my symptoms. However, I have also gone on a REALLY strict diet, so I don't know if it's the diet or the medicine or BOTH! I feel 50% better, but I still have another 50% to go. Unfortunately, last month, I accumulated new symptoms that deals with my pelvic region, and they've gotten worse. They're worse when I stand or just stand for a long period of time. So, who knows what will happen with this. Maybe it'll go away on its own as my bladder/urethra urgency, frequency, and tightening/pressure symptoms go away. I've read up that IC affects your bladder nerves, and those nerves are connected to the pelvic nerves, so I'm probably feeling something in connection with my possible IC. Overall, this is ridiculous. It's just one pain after the other and it doesn't stop. I'm so grateful that my urologist put my on Elmiron one month after my symptoms started. Usually, people with IC, don't get a diagnosis until 6 months AFTER their symptoms started, and THEN they start treatment. By then, the disease has progressed, and the patient will have to do a multitude of treatments and it could possibly take longer for them to feel results.

That leads me to my other update. I'm going to see a new urologist. Tyson has a k9 buddy who's wife has Interstitial Cystitis and sees this doctor. I spoke with her, and she says he's knowledgable in IC. It would just make me feel more comfortable to go to a urologist that has knowledge in the subject matter, PLUS, I know someone who goes to him, and who's sister (who has IC) goes to him. I'm trying to be as proactive as I can with this because I want to feel and be normal again within this month. I have a great feeling in my gut about this doctor. I have a feeling he will be the one that will know EXACTLY what to do, and I WILL return to a normal state and get back into my normal routines again within this month. I will give an update on the doctor's appointment when I go on Tuesday.

Anyways, I want to give a big thank you to those that are giving so much love and support right now. It's exactly what Tyson and I need through this difficult time.