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!

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