Joy!

A few years ago I was at The Orleans Hotel for some concerts with my girlfriends. We ran into these cute guys, whom were there for a convention. They graciously allowed each of us to take our photos with them. As you can see by the expression on my face I was full of joy that night and not a care in the world. I wasn't sick at the time so it was easy to be happy, let go and have fun. I remember the joy of that evening ever so vividly. Well, it's been a long journey, lots of tears and misery, but today I can say 'that' kind of joy is BACK.

People don't often talk about bladder issues, but I will. I will talk about any issue that effects me or speaks to my heart.

When a person begins to pee between 30 and 50 times each and every day in and day out, it wears that person down. It not only effects the person physically, but begins to wear the spirit down as well. It's not always easy to talk about the horrendous urgency I was going through with people I know here. They don't always relate to the silent suffering of a person like me, and I believe that's because they are busy with their own lives.

Part of this InterStim treatment, prior to having the devise put inside me, is to track how often and how much I am voiding. I didn't do it the first day because I devoted that day to relaxing and getting used to the new way my body was feeling. But over the last 24 hours I infact kept track.

Instead of voiding 30-50 times in 24 hours with an urge so relentless that often I wouldn't even make it to the toilet, I have only gone 8 times. EIGHT TIMES! AND NO ACCIDENTS! Well back in the normal range again. For that, you betcha I feel JOY today!

Lortab

While I have taken Vicodin before for pain without any issues, this Lortab, which I think is the same thing, is giving me some nausia. When I took two tablets at a time that first day, I thought I would vomit. Just taking one at a time now and I still feel nausia. It could be the dosage. I'll ask for something different after the next procedure. My nausia isn't bad by taking one pill at a time, so if that's my only complaint, and it is, this is a breeze!

A little note about the dreaded Enemas!

I'm not telling anyone what they need to do. I am only going to share what I do. Before a procedure most Drs want you to use a Fleet Enema. Sorry, I just can't do those. It's not comfortable at all in my opinion. It's just NOT my cup of tea. So, what I did was use the Fleet Suppositorys instead. They work great and produce the same result. Used three the morning before my procedure, which is more than you're supposed to do, but they did the job and I had no problems during my procedure.

The First InterStim Procedure

The IV continues in my arm giving me fluids and an antibiotic. The anesthesiologist explains everything that is going to happen, as well as the Drs are also talking to me from time to time. I am fully awake during the entire procedure. There is NOTHING to fear about being awake.

I was really proud that 'my' Dr. actually did the procedure under the guidance of the Medtronic Representative.

I heard someone announce the time that the procedure actually began and then again when it ended. It was about an hour and a half to two hours total.

The procedure involved quite a few needle pokes. No worse than a mild bee stings. Sometimes I didn't even feel the needle. Most of these needles were for pain killing and numbing the area where the Dr. was working. Every time a needle was getting ready to be used, my anesthesiologst would say, " a bee sing" or something simelar. We talked back and forth at times during the procedure.

My Dr. inserted several leads and tested them. You have to be awake so you can tell them if you feel it. If working correctly you will feel them in your vaginal area, in your butt cheeks, your foot, and also in the rectum or beside it. They ask you to tell them if you feel it, and so I did each time. There's no need to be ashamed to say you feel it in the rectum, because that's where they want you to feel it. They can also see these parts of your body quiver. All of this is done to make sure it's done right.

You don't have to worry about getting shocked or anything like that. To me the sensation is like having a fluttering butterfly inside, NOT at all uncomfortable or painful or worrisome. When they were testing the vaginal area, I laughed and said, "Does this thing give orgasms?" I am not without inserting alittle humor every now and then.

My Dr did something with the wires called 'tunneling' and I definately felt that, but it was literally no more than two seconds, and he gave me more injections of pain killer. So I have no complaints about that.

At the end of the procedure I received four stitches, and felt a couple of those, but otherwise, I can tell you that beyond the needle pokes that were not bad, the procedure is infact pretty much painless.

The outside stimulator is attached and you are almost finished. They clean you off really well with another cold solution that made me giggle because they were tickling me. They were chuckling along with me. But the Dr. explained they had to clean me off so I wouldn't begin to itch.

They had to pull the tape off that was holding my rear end open and I chuckled that that felt like 'duct tape' ripping and we were laughing again about it. The bandages were all put in place and they had me literally roll off the operating table to the rolling bed. I was pleasently surprised to see that I could lay on my back!

I was not in any pain at all. It was GREAT!

Rolling into the Operating Room

I'm not sure why they roll a patient into the operating room backwards. Perhaps its less stressful, I'm not sure, but I was so ready for this procedure!

They wheeled me next to the operating table that was piled high with at least six pillows. Three to elevate my butt and three for my chest. There was a purple foam head rest for me as I had to face down for the procedure.

I was basically naked as they unhooked the gown from the back and helped me climb onto the table. Wasn't so sure how I'd do with that narrow table and all of those pillows but it worked really well.

There were several people in the operating room besides my two Doctors, including at least one man, I'm not sure what his job was, but oh well. I'm certain I'm not the first naked woman he or anyone else has seen. Everything is very professional, and I was truly excited to be on my way to having a better life.

I had a female anesthesiologist. She was really nice. She slipped an oxygen mask on me and the tube fit in an insert to the foam head rest. She asked me if I would like to listen to some music and I said, sure, anything relaxing. She put on Motzart and some of the other great composers, as she had an Ipod with a docking station near my head and the music was amazing and relaxing.

I could hear the Drs. and everyone getting me prepped. I didn't realize until it was over that they put a blue sheet up between my head and the procedure, similar to when a woman gets a c section.

The preparation for the procedure involves cleaning the area with a very cold solution that made me giggle it was so cold! It also includes taping the butt cheeks open with a strong tape (I'll explain why later) and covering all of the parts of me that did not require to be exposed. Too late, it had already been exposed to everyone...lol, but it's so professional that it didn't matter to me and I KNEW beyond all doubt that I was well on my way to a much better life.

I pretty much relaxed as everyone did the prep and enjoyed the music. My anesthesiologist was awesome. She told me everything I needed to know, just before it was done and God Bless her!

My experience was very positive!

PreOp

January 28, 2010 changed my life. I received phase one of the InterStim.

Woke up, showered really well, took off my jewelry, dried my hair, put on my jammies and went to the Surgery Center. Might as well go comfortable and come home, hopefully that same way.

Arrived at the Surgery Center to alot of pre-op paperwork and a pleasent receptionist. They don't want you to wear make up, lotions, or perfume, so I felt very comfortable sitting there with the paperwork and the woman working had no make up on either. And, not to mention, they had my favorite News Channel on the the tv in the waiting area, so that was cool.

Was quickly called back and the pre-op, or intake nurse asked me a bunch of more questions and gave me a gown, slipper socks, and a head bonnet to put on. She took me to my bed where an IV was started.

I have to give this Surgery Center HUGE kudos for the way they did the IV. First they injected a light pain killer and then the IV. We all know that starting an IV can hurt, but they went the extra mile and it didn't.

I saw the Medtronic Rep come in and look around. I said, "I know you're here for me!" We had a great conversation and he showed me what the gadget looked like that I would be adjusting for the next couple of weeks and explained about the procedure.

My Dr. was late and while waiting for him, I had to pee SIX times. Talk about an over active bladder! The nurse was really nice though, escorting me each time, with an IV bag AND an antibiotic bag going in my veins.

Pre-op was very comfortable and I was totally at ease. Even watched some tv before going in for the procedure.

The gift of a few words

Just received my LOA papers from my Uro. At the end of the paper he wrote, "She will be a better employee after the InterStim procedures." I truly appreciated those extra few words that meant alot to me.

I will work tomorrow and undergo the first part of the procedure on the 21st. I pray it changes my life for the good. I have great hope!

Hoping for my miracle!

Having the first part of the InterStim procedure on the 21st. The journey truly begins. I beg of God that this helps me to have a more normal life.

I will never be fully normal because I'm ill....but to be able to sleep at night would be a miracle!

Suffering

After working all week, I came home last night and had to go to bed by 6:30 p.m. Why? Because of complete exaustion. That's what happens when you have Interstitial Cystitis. You never get proper sleep for the relentless bathroom trips. I lay down at 6:30 p.m. I was in the bathroom at 8:15 p.m. again at 9:30 p.m. again at 11:00 p.m. again at 1:30 a.m. again at 3:00 a.m. again at 4:30 a.m. and again at 6:30 a.m. I almost fell down at 4:30 a.m. from the exaustion and from slipping on a bathroom rug and I lost control of my bladder. I feel like my nights are filled with sleep walking to the bathroom and often not even making it for the loss of control. The urgency is excruciating. I cannot wait for the InterStim and pray that I have the procedure done very soon.

Today I have to vent

I don't often complain about how I'm feeling. But today I am. I haven't slept in three nights and am suffering so bad. Every time I lay down to rest, I have an uncontrollable urge to pee within five minutes. I've slept no more than 40 minutes at a time for three nights now and I can't tough this out much longer. I see the Uro on Tuesday and I pray to God that it's to get this InterStim going. I will gladly take it over this suffering any day.

I want people to realize that those of us with Interstitial Cystitis and other Bladder related diseases suffer terribly. Please be kind to them. They truly need it.

Never Give Up

But my experience is that people who have been through painful, difficult times are filled with compassion.

Amy Grant

The Way Out

Looking back upon this old photograph of me, I look like any little child. Dressed in my Christmas best and standing along side of my big sister, no one would ever suspect the things we endured throughout our brief childhoods. My sister and I were the step children. (There were four younger ones born to my mother and step dad) Our father died when I was just six months old, at the hand of a drunk driver...himself. Not only did he die as a result of his drinking, he took along with him a woman in the oncoming vehicle that he hit. Apparently my mother felt the need to marry quickly afterwards and she did, thus leading my sister and I into a life of complete misery. It's tough to say this, but my step dad looked upon my sister as his own personal 'play thing'. I need not go into more. She was fifteen years old when she decided she had had enough of it and she went to school, telling the authorities what he was doing. Needless to say she never came home that day. None of us knew why she never got on the school bus to come home, but were soon to find out as yet again, my step dad was arrested for abuse against a child of the worst kind imaginable.

There was alot of turmoil in the house, more so than usual after my sister left home. She was described by both my mother and step dad as a runaway. The work load on all of us around the farm only got worse, as the Judge decided to send my step dad home on probation instead of sending him to prision. After all, there were five more children (left there to abuse, in my opinion) who needed to be fed, a 110 acre farm that needed to be worked, and a job in the auto plant that could not be lost. Child molestation was quick to take a back burner back then. He was sent home on probation and we were sent back to the fields to be his slaves.

It was a month later almost to the day that my sister left, that I also left...never to look back. I was only fourteen years old.