Thursday, February 28, 2013

Two for Two

Thank you, God for another good day! Two days in a row that's unheard of! Today was one of the best days I've had in a while. It started off with watching a few episodes of Criminal Minds. If you know me then you know I love that show. After that, my dad and I went to get new tires for my car. I was proud of myself because I can finally say I did something for my car without having to depend on my parents for the money. Next, me and my dad went to Arby's and enjoyed a delicious roast beef sandwich. Then it was time for a nap :) I LOVE my naps haha. When I woke up, I decided to go karaoke and I do believe that was the best decision I have ever made. I love to sing but the people I sing with are just amazing! I told them tonight that I do believe if I could come karaoke with them every day then I might get rid of this horrible disease. I haven't laughed like I did tonight in a long time. I really enjoyed karaoke tonight! If you guys are reading this, THANK YOU! Today was just an over all awesome day and I'm so thankful for it. I am so blessed! When ever I have a bad day, I'm going to remember this day to help me get through the bad days! I'm just extremely blessed! Have a good night everyone!

Wednesday, February 27, 2013

Remember the Good Days

Praise God! Today has been a pretty good day so far. I know that can change at any moment, but I'm enjoying it while I can. My brother has come to visit me today and that makes me happy! Today just seems like it's going to be a good day. I haven't posted since Monday, so I need to catch up on what is going on now.

On Monday, I had a doctor appointment. Like most of my recent doctor appointments it didn't go as expected. I didn't get any answers as to why I'm nauseated. When I told them about my symptoms the first thing they thought was KIDNEY STONE. Imagine that. That's only the hundredth time in a year that they have thought I have had a kidney stone. They did a KUB and it turned out normal.. SURPRISE! Next they did blood work and urine. Blood was normal. In the urine no infection showed up but there was a trace of blood and a trace of protein. The trace of blood is easy to explain. My bladder is so inflamed now it is bleeding. The protein didn't really have an explanation for that. So the nurse practitioner wanted to do a 24 hour urine study. I also told her I thought I needed help with getting through the trauma of all this. I have been depressed quite often since I was diagnosed and even before that with the frustration of not being able to find anything. I had been traumatized and I needed help. So she told me to try Viibryd. So I'm trying that and it will take four to six weeks to take full effect on my body. I will keep you up to date on how that is going too. Yesterday I started my 24 hour urine test. You never realize how much you actually go until you do one of those. I turned it in this morning and got some more blood work done. I'm not sure how long it will take to get results back but hopefully soon.

Today I don't have much plans. Just taking it easy and hanging out with my brother for a while and then going to the gym later Mary. It will be the first time I've felt like going to the gym in over a month. Don't worry I won't over do it. I plan on having a GREAT day! Thanks for all the prayers and kind words! Praying for a cure! maybe 2013 will be the year!

15 days until my next appointment in Birmingham!

Monday, February 25, 2013

Birmingham to Today

Well after a TERRIBLE night, I just woke up and don't feel guilty one bit. The past four weeks I have experience intense pain and awful nausea. I have called Birmingham twice after two ER visits and they just don't seem to care. Oh yeah, let's talk about Birmingham. 

January 28, 2013. I was so excited! I was finally gonna meet an "IC specialist", a doctor who can help me. My adrenaline was rushing! So very nervous. I found out quick that would crash. During my appointment I was given what I thought was the worst news EVER! My doctor asked me how many times I urinated during the night (frequent urination is a symptom of IC). I told her I don't go that much. Maybe once a night. She told me right then that I was having symptoms because of the foods I was eating. This is when my adrenaline crashed. You see I FOLLOW my diet as best as I know how to. I have to cheat every once in a while but you try giving up all your favorite foods at once. Then she told me that she is not a fan of giving narcotics for something like this and I said that was fine cause I don't want to be on narcotics unless I absolutely have to be. Then the worst news came. She was referring me to a pelvic floor therapist to start therapy to help me learn how to control my pelvic floor muscles. Doesn't sound too bad right? It gets worse. I can't get an appointment until March 14th, 2013 and it's January 28th, 2013. That's a month and a half away and I am already in so much pain with no relief. So she gives me a new pain medicine. It's non narcotic but acts like one so that should help, right? WRONG! The only thing this medicine does for me is make me itch. I'm actually scratching myself right now. I feel like a dog! 

I go home pretty bummed. These were not the answers I was looking for. But what can I do other than to accept it. It was a sad ride home. But my dad made it better. I sang the entire way home and he told me he could listen to me sing all day long. Then he got me an ice cream cone. Made me feel better. That is now my go to thing whenever I feel bad. 

From this point it is just downhill. The pain has gotten worse, much worse. Unbearable worse. I started having nausea about 3 weeks ago. It has gotten out of control. Everything I eat makes me nauseated. I went to the ER a week ago and found out I have a UTI. That makes things 100% worse! They gave me some pain medicine and some nausea medicine. Well I had ran out so I called Birmingham and they told me I needed to see my family physician cause it sounds like I have something else going on. So this brings us to the present. I have a doctors appointment with my family physician at 3:30. It's 2:15 now so I need to get ready. I'll post later what went on with that. I pray everyday for a cure! I pray everyday for relief! Have a good afternoon everyone!

Sunday, February 24, 2013

Catch up: My Background

I've never blogged before. In fact, I HATE writing. It was never my strong point in school. But I was diagnosed with two invisible illnesses this past year and it has brought me tons of emotions. I had a friend tell me to try blogging to help me vent my emotions. So this is my stab at blogging. I've decided to start at the very beginning of my journey to help you understand what I have and what I am going through. 

January 30, 2012. I work a swing shift at one of the local Emergency Rooms.I had just gotten off a midnight shift at 7 am  and headed home to get some rest for my next shift. I felt this sharp pain in my side and felt like something burst inside of me. I called my doctor and was told that I might need to go to the ER for help. When I get there they do the normal lab work and get a CT of my abdomen. The only thing the CT showed was inflamed lymph nodes and I was told that I needed to see a surgeon right away. So the next day I saw a surgeon and he told me he wasn't concerned about the lymph nodes but thought my gallbladder was the problem. I was set up for a HIDDA scan. The HIDDA scan came back that my gallbladder was only working 29% so that meant I needed to have it removed. 

February 14, 2012. I spent my Valentine's Day having my gallbladder removed. So much fun, right? NO! Two weeks after my surgery I had a check up and I still didn't feel right. I was given a steroid shot and told to come back in two more weeks. Two weeks later I still didn't feel right. My surgeon wanted to do an EGD, which is where they go down your throat to look at your stomach. Thank God it wasn't a Colonoscopy, which is where they look at your stomach the opposite way! EGD came back normal and I remember waking up, hearing it was normal, crying until I fell back to sleep, and waking up and crying again. I was so frustrated. Why wasn't I feeling better? 

May 2012. My parents decided I needed to go to Birmingham, where the world's best doctors are found. Didn't have much luck in Birmingham. We did however eliminate some serious diseases. Five months after the initial attack and we still had no idea what was going on. 

June 2012. I decided to see my OBGYN to see if he could help figure out was going on. First appointment and he said he thought it was Endometriosis, but the only was to diagnose is to go inside and look. At the end of June I was set up for my second surgery in 5 months. Dr. Keith knew what he was doing cause he found the endometriosis and got rid of it and said I should be good in a few days. I was so excited we finally found out what was going on. After 6 months of searching we finally had answers. I was so relieved! Well a few weeks later I still did not feel right. I was still in pain. I made an appointment with my doctor and told him what was going on and he decided to start birth control. I tried that for a couple months and it still was not helping. My pain was getting worse. I went back to my doctor and he said I might have Interstitial Cystitis and referred me to a Urologist. 

September 2012. I had my first appointment with Dr. Smith. He agreed with Dr. Keith that I might have Interstitial Cystitis (IC) but the only way to know was to stretch my bladder and look at it. On September 29th, 2012, I under went my third surgery in less than a year. Out come: My bladder was completely inflamed. 100% inflamed. This was not diagnosis for the IC. During my surgery my bladder was coated with a cocktail of anesthetics and steroids. If that helps then I had IC. Well, the surgery worked! I felt better. Next it was time for my check up after the surgery. That's when the news of what I really have sank in.

According to PubMed Health: "Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. IC is often misdiagnosed as a urinary tract infection. Patients can go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. The condition is most common around ages 30 to 40, although it has been reported in younger people. Women are 10 times more likely to have IC than men."

There is known cure for IC. There are several ways to help treat it but it will never go away. I had to make many changes to my life in order to help myself stay better. The first thing I had to do was change my diet. This has been the hardest thing for me. The IC diet takes acid out of your diet. For me this meant: very limited fruits, no tomatoes, no cured meats, no processed meats, no peanuts, pecans or most nuts, no foreign foods, no alcohol, no carbonation, no caffeine....  Wait a second? NO caffeine? No carbonation? I LOVE Dr. Pepper. My uncle was an addict and it was apparently hereditary. And no foreign food? I am a Mexican at heart. I eat Mexican food every day! This was going to be the hardest challenge of my life. Along with the diet change I tried DMSO treatments. For a DMSO treatment a catheter is inserted and that cocktail of anesthetics and steroids is poured in. I have to hold it in for twenty minutes and then I can urinate. The "best" part about it is it makes me smell like garlic. My dad said it was more like mildewed hay. You get the picture. It makes me STINK! 

About a month later, I started hurting again. This time worse. I started having bladder spasms. One of the worst pains someone can endure. I was put on muscle relaxer and a non narcotic pain reliever to help.This stuff didn't even touch my pain.So I continued with DMSO treatments. Still no help! I finally told my doctor nothing was helping and he said I might need another surgery to stretch out my bladder again. January 9th, I was set up for my fourth surgery with DMSO. After the surgery I felt good for about 3 days and I went downhill. I was hurting really bad again and much worse than before. I talked to my doctor and told him this just wasn't working. And asked if he would refer me to a specialist that can help me. He agreed and I was referred to a urologist at the UAB Kirklin Clinic. I had my first appointment on January 29th and was referred to a pelvic floor therapist. My appointment is March 14, 2013 and I cannot wait to get in. 

Right now I am at the worst I've ever been. Most days I can't get out of bed or off the couch. I have to call in to work a lot. But I'll get into that more on my next post.  It's been a long day and I'm going to get some rest! Good night everyone!