Friday, April 26, 2013

I just need to rant!

One of the reasons I made this blog was to get some frustration out. Today I need to do this! I was so close to getting better. I had THREE days of little to no pain! I was so happy. Last week was a good IC week. This week is not the case! I am hurting so bad right now. I can barely walk because the pain has gone to my hips. I don't understand why I am hurting. I got in to the pain clinic and he prescribed me some medicine but it only works for maybe two hours. I am so tired of this! I just want my life back! Sometimes I wonder if I just stab my bladder a few good times if it will start acting right, but then I think no silly. This isn't just my bladder. It's my whole body. My body is fighting against me. Why can't me and my body just get along? I just want so peace in my body! For once I want there to be no pain. Please pray for me as I struggle with this. This not only takes a toll on me physically but also mentally and emotionally. Thank you!

Monday, April 15, 2013

Good News

I've always been told that good things come to those who wait. I have done an awful lot of waiting the past year and a half and it always seems like I just get bad news. Well as most of you know I have been patiently waiting to get in with the pain clinic. I can finally say I got in. They called me this morning and I'm not sure how this is going to affect my life yet. I hate taking medicine especially narcotics but if this place is going to give me some relief then I'm all for it. I'm tired of not being able to move much and being able to go places. I know the pain clinic will still cut down on my going places but I'm hoping it will allow me to be a little more active in life. I will just lay in bed and sleep because I know as long as I'm asleep I won't hurt. But the instance I wake up, BAM! Pain sets in again. Please pray for me as I start this new journey! Thank you!

Friday, April 12, 2013

Moving Forward

So the past few weeks have been tough. The nausea has been out of control. I've had more trips to the ER than a frequent flyer would. I went 5 times in 10 days to be exact and then I've had a couple more since then. Anyways, I guess the purpose of this post is to get everyone up to date on my medical care. What's being done for me. I am still doing the therapy once a week. And YES, I still love my doctor! She has helped me a ton in trying to figure out what to do next, since my urologist doesn't seem to care. We do know that something else is going on, but we do not know what that something else exactly is.

So I've gotten a few new doctors since the last time I've posted. I've only seen one and I love her! She is my new GI doctor. I really liked her approach on helping me. She isn't worried about the pain right now. She wants to get my nausea under control first and then we will worry about pain. I am taking Reglan 4 times daily and Prilosec twice daily. The Reglan seems to be helping. One thing I really love about this new doctor is she has IC just like me. She understands my pain.

I have a new doctor to go to about my IC. My initial appointment isn't until September 20, but they told me they usually have enough cancellations that will move me up a couple months. I think I can wait that long. I've waited this long. I have heard very good things about this new doctor. He is a chronic pelvic pain specialist and that is exactly what I need.

I'm hoping I will get a call next week about getting into the pain clinic at UAB Highlands. People ask me why I didn't try to get a pain specialist closer to home. Well to answer that question: when I got my paperwork from this clinic and it asked me what medical conditions I have and it listed Interstitial Cystitis, I knew I was in the right spot.

Yesterday, I went for my therapy and we talked a lot about some possibilities. There is a possibility I could have Fibromyalgia and Gastroparesis. Both are connected to IC, so I knew there was a chance to begin with. We tried something new in my therapy and it really seemed to help. She did an instillation of lidocaine. Which means she filled my bladder with a lidocaine solution. It helped tons! I was pain free for 30 minutes!

Today I started the Lupron Depot. This will put my body in temporary menopause and is supposed to help my endometriosis. FMLA(Family Medical Leave Act) paperwork is finally in and filled out. I do have limitations now. No more night shift and my shifts have been
cut to 6 hour shifts. Speaking of work I have to work a few hours this evening so I'm off to take me a nap. I haven't been sleeping well at night. Hope everyone has a great evening!

Tuesday, April 9, 2013

Food Problems

Today I'm having a hard time with foods. I want so bad to eat the things I love. Such as chocolate, Mexican food, and stuff with tomatoes in it. I want a Dr. Pepper so stinking bad! And it's so hard to watch others eat the things I want. Like tonight my mom ate chicken fajita nachos. It has grilled onions in it and as she was eating them I wanted some so bad. My heart breaks every time I see something I can't have.

I have an analogy. There is this puppy at your feet and you have a burger and french fries in your hand. Well this puppy has the cutest look on his face and so you reach down and pet him. Now that puppy has it in his mind that he is going to get some table scraps. But then you don't give the puppy anything. That is pure torture to that puppy.

This is what I feel when there is food around me that I want and can't have. It is pure torture to me. I want so badly to eat the things I used to eat. I will defeat this one day and will be able to eat things not all the time but rationally. I need strength to get through it. I can still taste a Dr. Pepper when I see one. But one day there will be a cure and I WILL be normal again!

Tuesday, April 2, 2013

The Good and Bad

Well I was going to wait til Friday to post anything, but i just feel like posting. The last time I posted I think I was doing pretty good for the most part just in terrible pain. Well I've had a few ER visits and doctors appointments since then. I guess I'll start with Tuesday a week ago. I felt much better well a little better and even got to go sing which is my favorite thing to do. I left there and went to hang out with a friend. When I got home. I started hurting again. So I took a pain pill. Well after two hours I still was hurting really bad so I decided to go to the ER to get me a pain shot. When I got there they gave me a shot of dilaudid and it didn't help me one bit. I started crying my pain was so bad. An hour after the shot they decided to give me an iv and give me some more dilaudid through the IV and decided to do a CT scan for kidney stones. This helped for about an hour and i was hurting again but this time in my epigastric area, which feels like your chest but it's just below. Well the doctor came back in and told me I don't have any kidney stones but he thinks I have some gastric stuff going on, like acid reflux and constipation. The acid reflux would be what's causing me to have the epigastric pain. He told me to make an appointment with Dr. Raju which is my gastroentologist and gave me a more effective pain medicine. Since then I have been very bad nauseated. I know I've mentioned nausea before but it's been worse than normal. Thursday I went to Bham after I worked a ten hour over night shift and stayed nauseated the whole ride there. While waiting on the doctor I got sick and when she came in I got sick again. But after the therapy I felt a little better. She said she could tell I was worse. SHe gave me a prescription for people who have IBS who have problems with constipation. On the way home, I stayed nauseated the whole ride home. Friday afternoon, my doctor in bham called to check on me and i told her I wasn't any better and she told me to go to the ER to get some relief. So I did and the doctor I saw gave me some medicine called compazine that really helps my nausea. Saturday I was bad sick again but I think it was just from pain. A very painful day. Sunday I went to church with my dad. I want to thank everyone who came up to me, hugged me, asked about me, and told me they were praying for me. Sunday evening I worked 12 hours, 6:30 PM to 7 AM. When I got off work I stayed up so i could go to my doctor's appointment with my gynecologist. I not really sure why but that appointment was so emotional. Maybe it was because I was so tired. The nurse asked me if I was related to anyone who had been diagnosed with breast cancer before the age of 50. I said yes. My grandmother was diagnosed when she was 45. They now offer genetic testing to see if I have the chromosome that carries genetic breast cancer. I agreed to try that. I also talked to my doctor about doing another surgery for my endometriosis. He told me he didn't think it would do any good but there is a medicine I could try called Lupron Depot. The only thing about it is the side effects. Which is menopause. I would be going through menopause temporarily. I told him I wanted to try it. After the appointment I got very bad sick and very emotional. I cried so much. At 2 I had an appointment with Dr. Boorgu, the kidney doctor. Finally an appointment with some very good news. Dr. Boorgu told me that my kidney function is great! But I have a concern about polycystic kidney disease running in my family. He agreed to look into so I was set up with a kidney ultrasound for this Friday. When I got home from my appointment I was so tired. I had been up for 24 hours and I slept until about 4 pm this afternoon, only to get up to pee, and take pain medicine. This evening I felt good enough to go sing and had a wonderful time. The picture is me after I got home tonight.  Here's a link to the song I sang tonight: I hope everyone has a good night! I'm off to bed!