Sunday, March 24, 2013
So update on me. As you know I went to my first appointment with my new doctor on March 14. I love my new doctor. Well she is the CRNP but she is so awesome. She is a Beatles fan so we can relate. Another thing we have in common we both wanted to be a forensic pathologist. She is also a Christian. Well after my first appointment I was told to come back in two weeks. Well Friday, I went to Huntsville with my daddy and his friend and I had a really good time. On the way home I started feeling weak and I fell asleep. When I got home I ate a burger and started feeling sicker. A few minutes later I got sick and there was red in the vomit and I ended up at the ER Friday night. Everything checked out good and I was sent home. Well the rest of the weekend I felt ok not good but ok. Sunday I worked and had a pretty good day. I was too busy at work to notice. Monday I woke up very nauseated. and was taking zofran every 6 hours and it wasn't helping. I got sick again later that night and still just felt awful so I talked to my mom and asked her if she would take me to the ER so they could give me Phenergan and also check my kidney function while I'm there. Well everything checked out again. The next morning when I woke up hurting very bad and nauseated again. I called my doctor in Birmingham and asked if I could get in any sooner than two weeks that I was miserable. They told me to be there at 8 am Thursday morning.
Thursday morning, I got there and the CRNP came in and she said that we would go ahead and do the therapy since I was in so much pain. During my appointment she talked to me about what was going on in my life and she told me no wonder I was hurting so bad. After she done I was relaxed and had no pain whatsoever. I stayed this way for ten minutes this time! She did tell me that she could tell that I am getting better but there are some trouble places that we would have to work on.
I talked to her about pain management cause the medicine she gave me wasn't working and it was making me itch. Just making me more miserable. She told me to definitely come of that medicine. I told her that I was given some medicine in the ER and that I was taking it for pain but it wasn't working. This is the plan we came up with. I will keep taking the pain medicine and take it more often until they can get me in with a pain clinic. That will hopefully be this Thursday. I will go for see her every week until I feel like I'm getting better and then I will start going every two weeks or something like that. She told me to keep my appointment with my kidney doctor cause she feels like something else is definitely going on. I go see that doctor on April 1st.
Right now I'm sitting here talking with my mom and my uncle Pete(our walking miracle). I go to work at 6:30 and work all night. I have a busy week ahead of me. I work tonight and tomorrow night and then I got back to work Wednesday night and I get off at 5 and will be on my way to Birmingham for my appointment with the CRNP and hopefully the pain clinic. Then I'll go back to work Saturday night. WOO 4 days this week. I haven't worked more than one day in a while. This week is going to be rough and I'm not gonna lie I am not looking forward to it and I'm a little nervous about it. Working a lot and little sit and schedule change makes my IC so much worse. But hopefully I will be alright. Please say a prayer for me this week! Things are going to get better! Well it is time for me to get ready for work. I hope everyone has a good week!
Wednesday, March 13, 2013
This blog was written over a couple of days. So the timeline is a little off :)
Today(Wednesday) I am experiencing so many emotions but the main one is anger. It has been a terrible past 5 days. So much has happened. I'm so emotional right now it's crazy. Let's start Friday.
Friday morning I got really bad sick again with nausea. I had to take a Phenergan and it knocked me out so i slept most of the day. When I woke up that afternoon my mom told me my family physician's had called and left a message that I have been referred to Dr. Boorgu and my appointment is April 1st. Dr.Boorgu is a kidney doctor. I called Monday and asked the nurse why I was being referred to Dr. Boorgu and she told me that I had an abnormal 24 hour urine test. This didn't tell me anything so I asked her what was abnormal about it and she told me my kidney function is not at the level it is supposed to be at. I think my heart stopped. I was expecting a normal test and nothing like this. But I'm being optimistic. It can't be that bad since my appointment is still two weeks away. That means I don't have to see a doctor stat.
Also on Friday I got a phone call from my local urologist. Wednesday I had dropped off some paperwork for my doctor fill out so I can take Family Medical Leave. On this leave I can still work but if i need to be off because of my serious condition then I can't be punished. It protects my job. When My urologist's office called Friday they had more bad news for me. My doctor will not sign the papers since he has referred me to UAB. So I called my urologist at UAB to see if they would fill out the paperwork. They agreed to it and I faxed it to them on Monday. Well Tuesday I got a phone call from UAB and the nurse told me that my urologist would not authorize family medical leave because all I have is IC. Woah woah woah. All I have is IC? Let me get this straight. I only work one day a week and most of the time I have to call in on that day because I'm in so much pain. I cry every day from pain. I can't eat because I'm so nauseated. I am in the ER every two weeks because I can't take the pain anymore. I am in more pain than 80% of all patients I register at I work. I have a disability and you won't authorize family medical leave because all I have is just IC. IC a chronic inflammation of the bladder disease that can cause pain that can be as bad as stage 4 cancer. And all I have is just IC. Can you say I'm mad? I am IRATE! But I'm not giving up. I have two more doctors to ask to fill out the papers and hopefully one of them will. If not then I don't know what I'm going to do.
Today (Thursday) I headed to Birmingham to meet my pelvic floor therapist. I have so much optimism right now. I really think.this therapy will help. The doctor explained to me how this works and why it is causing pain. She is very good at what she does. And when she was finished I had zero pain. Now of course my pain is back but it's a different pain. Also since the therapist is an actual doctor they will fill out my family medical leave. I was prescribed some new medicine that is placed near where the pain is so it has a better chance of working. I'm so excited about this and so glad the latter part of this post has good news. God has blessed me so much! Thank you so much for all the prayers! I truly think I'm headed in the right direction now!
Saturday, March 9, 2013
The past few days I keep getting super nervous about Thursday, and the closer I get to Thursday the more nervous I get. For those of you who don't know what Thursday is for me: I go see my pelvic floor therapist for the first time. I've haven't done a ton of research on this therapy but I have done a little and asked others what they thought about it. I'm pretty sure it's 12 weeks long. I also know that in order for me to get better I will have to endure a ton of pain. That is why I'm so nervous. I don't understand why someone has to hurt worse in order to get better. Why can't i just be given medicine to help this? I've been through so much pain the past year and I'm so over it. It needs to go away and stay away.
Well I ended up having to take some medicine so I'm off to bed. Hope everyone has a good night! Praying for a cure!
Friday, March 1, 2013
I have experienced so many emotions since I started to get sick. Sometimes I have so much anger that I just sit and cry. Sometimes I am so sad that I sit and cry. Other times I am so happy that I cry. Regardless, I cry frequently. Here lately I've had a lot of anger. I'm so angry with my urologist at UAB. I feel like I don't have a doctor. I've waited a month so far and with 13 more days to go to see my new doctor that my UAB urologist referred me to. I don't have a problem with the waiting. I have a problem with waiting and my doctor not doing anything to treat my IC while I wait. If you don't treat something it just gets worse, and I can tell that I have gotten worse. Blood is being found in my urine now and that's not good. That means my bladder is so inflamed it's bleeding. And my urologist wants to do nothing about it. I feel like they think I'm faking everything. Believe me, my tears are REAL. Some people have asked me if they can just put me in the hospital to help me get better. Sometimes I wish the answer was yes. Maybe then people would take my invisible illness more serious. But you have to meet a certain level to be put in the hospital and since all of my lab work comes back normal, I never meet that criteria. I know there are other IC patients who are much worse than me and I don't see how they do it.
Today is Self-Injury Awareness day. Please pray for those IC patients who have had a hard time dealing with the terrible disease and have hurt themselves. I know what they are going through. And I can tell you that it would be easy for someone to hurt themselves. You get so depressed and you don't feel like things are ever going to get better. You feel like you will never find a doctor who will be able to help you. It gets depressing living like this everyday. For me, just seeing someone eat or drink something I can't have gets me depressed. These sufferers are going through a lot. Self-injury isn't just cutting yourself. These people can get addicted to pain medicine cause they feel that's the only way they will be able to function. That is self injury. The ultimate self injury is taking your own life. Please pray for those struggling that they will realize things will get better one day! Please pray for us to be strong! That we will be able to give all of our pain and worries to God and trust that he will take care of us.
I know this is an IC based blog but also take time to pray for everyone who is struggling with self injury. Pray that God will give them the strength to believe they are special. We are all special in our own ways. I pray these people will feel some worth.