Tuesday, June 20, 2006

Setbacks during recovery

When dealing with trying new medications it can be like a roller coaster at first to find the right dosage but I will get there for sure with time!

I knew I spoke too soon about the Lyrica working for the phantom urgency. It came back last night with a vengance! I was devastated and confused. I don't know what to do now! My heart is so upset about this.I should not have opened my darn MOUTH! Every single time I say something is working it backfires twofold in my face a few days later! I feel like never talking about anything again for fear of jinxing it!WHY IS THIS HAPPENING TO ME? CAN I CATCH A BREAK SOMEWHERE? I JUST WANT TO LIVE LIFE IS ALL? IS THAT TOO MUCH TO ASK FOR? There are several factors that may be going on here that I am thinking could be the cause of the phantom urges attacking me last night and today. I will list them and bring them all to my local urologist today:

1. I still have a suprapubic catheter in there with a 30cc balloon in there which is making it hard for me to get all of the urine out through the stomawhich leaves residual urine in there and thus there could be an infection brewing (The suprapubic has been in there with no change in 2 months, that's a LONG time) I want them to do a urine culture no matter what today!

(My 5 year wedding anniversay is next week and we are going to stay in a mansion for 2 nights and I want no infection present then)

2. My period is on it's way and ovulation has always been my weekness for two weeks before my period.

3.I had vaginal surgery with my reconstuction and if it's swollen in there, it may be causing swelling in other areas such as where my urethra used to be

4.Learning how to catheterize the stoma may be causing an upset in there an irritation....

5. I may need an increase on the Lyrica for the weeks followng ovulation and the days right before my period. (Just put in a call to my Pain Management Doctor)

I am trying hard to figure this all out since all of my doctors just shake their heads and say they don't know what is happening!!!!!!!!!!!I feel like not speaking about my treatments until I know for sure if they are really working. And then it can still backfire months or years later.....I am so tired of searching for the answers to this disease. If I don't look for the answers, the doctors just say they can't help. So I have to come up with what could be wrong. I don't remember going to med school? But I have to be my own advocate or nothing will happen at all. If I don't fight for my health, no one will. That's how the medical community is with my condition. They just shove me of to another doctor or shove a medication at me and then tell me they can't help me anymore, so basically I have to suffer for the rest of my life if I dont look for the answers myself. Nice huh?I am sorry I spoke too soon about my relief with the Lyrica!

Up and Down on the roller coaster we continue to go.........

The pain management doctor has increased my Lyrica to 150 mg 2x a day and then in 3 days if there is no improvement I can go up to 150mg 3x a day.

I hope this works for me. Praying for another miracle.

If I can just get this phantom urge under control. I will be functioning well.

This is called recovery and I am right in the middle of it and bound to have set backs. I am not superwoman, although I would love to be!For those of you who know I am fighting to have life back, please know I am trying my best to make it happen.

Postives for Today: New dosage of Lyrica helping already. I pray that it continues. My pain management doc called me right back this morning. The cathing is going as well as it can be for now. The Suprapubic comes out next week before my anniversary if all goes well. I dropped of a urine culture to make sure there is no infection. I hope they processs it accordingly or I will have to drop of another sample with my primary care doc who will always do a culture for me no matter what.I am getting there. Slowly but as steadily as can be for now. We all heal differently and can't compare bodies. We can share experiences and that is what I strive to do. Some people recover with no problems and others have troubles from time to time. That's what makes us all unique