Interstim implanted!

Friday I had my Interstim put in! I was so excited. It was a very nerve racking day though. I got there at 8:30 and went to the registration/lab area. During registration they say "Ok, that will be $1496.15." Um....yeah somehow they neglected to tell me that part before hand. I about broke down and started crying. Actually, I did cry a little. I knew that I would be paying for this, but I was told it was AFTER the surgery was done.

So, after explaining I did not have that amt, she then asked for half. Yeah, we are in the poor house, living paycheck to paycheck. And you expect me to pull $700 from my butt? I explained all I could afford was $100. They kept trying to talk me into paying more but I just cant. It was so frustrating. I truly thought that they would cancel my surgery. Luckily they took the $100 and now I am stuck having to pay $100 each month for the next year or so. Ugh, dont know how I am going to get that but God will make a way. In the mean time, we will be eating lots of cereals and mac n cheese.

Then, we got to go to a private room and begin the wait. It took FOREVER! The surgery was supposed to be at 11 but my urologist didnt come at 11. They finally take me to the pre-op area and the Med-Tronic rep came. She showed me how to work the remote, answered my questions, all that good stuff.

The anesthesiologist came and asked me a million questions. So I ask where my doc is and come to find out that the surgery had been rescheduled for 12 and no one had told me. Yeah, its only 1 hour, but take into consideration that I hadnt eaten since 8 the night before. I was freaking hungry. I was nervous, and just wanted to be done.

Finally dr comes and the next thing I remember is waking up in post-op. I was in horrible pain. They gave me some pain meds (dont know what) and then i started itching horribly. All over I couldnt get the itching to quit. They gave me benedryl and it didnt really help. My back broke out in a horrid rash. It was just miserable.

Then I finally went back to my private room. Got to leave. So, we decided to get some food. I was starving. We went and ate some amazing Japanese food. While there I realize that I am not feeling the Interstim where I should be. Instead, I am feeliing it in my leg and it is starting to get very uncomfortable. So, I thought I would wait it out and hope it would fix on its own.

Eventually I call my Medtronic rep. She meets me up at the hospital and I am thinking OMG I am going to have to have surgery again. But thankfully that wasnt the case. She just plugged up a machine and touched it to my back.

She explained how all the nerves are bundled together. The nerve that the Interstim hits (the sacral) is in the middle. So, the device may move around a bit and cause it to hit another nerve. With her special machine she is able to move the part of the device that hits the nerve. So she did and it helped.

But that night it went back into my leg. She is out of town so I am having the stimulater sending signals to my left leg. It is very uncomfortable. I have been able to use the restroom though so that is a good thing. Just wish it would come off my leg. I can only get comfortable in certain positions. Have to keep my left leg straight. Have to sleep on my right side. But I am peeing free! No more tubes! It is an amazing feeling!

Permenant Interstim Friday!

The "call" came a couple of weeks ago. They finally approved my Interstim! It has been a roller coaster of emotions since. I am so excited, happy, yet scared that this is a dream, or they will change their mind. What if something happens and it has to be rescheduled? etc, etc, etc. I am trying as hard as I can not to get my hopes up. But I have been waiting almost 3 months for this approval. During that time I have had to deal with my bladder getting distended and cathing myself. Definetly not a fun thing to do. But you can call me the "cath queen"!

So, Friday is my surgery date. This Friday. All week long I have been just staring at the Interstim photos, and reading people's stories. I am obsessing over this and trying so hard not too. My life is really going to change. I laugh off the retention and bladder spasm/pain issues, but deep down it hurts and is embarrassing. During school/clinicals they say "ok lets take a quick bathroom break" and I think, "gee that would be nice, wish I could".

Friday is so close, yet so far away. I can almost touch it, feel it, smell it, taste it. I know most of that is not even possible but it is within my grasp!

The pain from the endo is getting worse. I only haved 2 more Lupron injections and then I am done. What will I do when the pain continues and i cant do Lupron anymore? That is my fear. In the meantime I have been doing PT. It is going ok. I thought it was helping at first, but the past week or 2 the pain has gotten worse. I am tired of being in pain, tired of hurting, tired of not sleeping, tired of not peeing and so on and so on.

I really think that there is more to my problems that Endo and Urinary Retention. My urologist says I dont have IC, but I really feel as if I do. I have all the symptoms except the peeing 50 times a day. But my bladder spasms, its painful, it hurts when it is fulls, hurts when its emptied.

I also wonder if there is more to my endo pain than endo. I know I dont have fibromyalgia, but I wonder if there is something else. I have been seeing a pelvic pain specialist. He has been great. He has been trying all sorts of treatments to see what helps. Each time I go he discovers another problem. So, we are working on one thing at a time to see if it will help with the others. Right now, he is trying to get my inflammation under control (bladder, uterus, pelvic walls, etc all majorly inflammed). He has me taking valium (and not the traditional way if you know what I mean) to get the inflammation down. The hope is that this will take pressure off of the bladder and groin area (where my endo pain is) and help decrease that.

I just feel like an old lady. I am only 27, yet I am on so much meds, cant do much without being in pain or exhausted. I can fake it through school/clinicals but when I get home I cant even get off the couch/bed.

Is it too much to ask to be normal for once? Is this supposed to be a lesson? What do I need to learn?

No news on Interstim yet :(

I am getting so depressed. The temp Interstim was taken out last week. They made it sound like they would be calling me by the end of the week to schedule a perm one. I havent heard anything. I called Fri to find out but had to leave a message for the lady who was getting it approved through insurance. It is so hard going from being able to pee to getting distended. The temp worked soo well. I only wish he would have let me keep it in till I got the perm one.

My back is still sore and hurting from where it was. I got my 2nd lupron shot this past week. My pelvic pain is hurting pretty bad. I hate taking meds for it, I feel as if I am killing my liver and my brain. They dont even help that much anyways.

I have been getting tingling in my feet. I have to move them around almost constantly. If I dont, then the tingling goes up my legs. Its very uncomfortable and weird. Also, I have been having problems saying words. About 5-10 times a day I will be looking at something (like the couch) and I can not say the word. Or I will call it something completely different. I do not do it on purpose either. I am not sure if this is from being exhausted, both mentally and physically, or the cause of some health issue. But it is really frustrating.

Nursing is extremely difficult for me right now. I am really questioning why did I get into this now. I am constantly studying and never have a break for anything. Logan has really been affected by this. I have tried to make time to play with him each day, but even then it isnt as much as I used to. I used to be with him almost all day every day. Now, its barely 1 hour of just me and Logan time. It has really affected him, and made him really grouchy and angry. He has thrown so many fits and that definetly doesnt help with the migraines. I am hoping that it gets better and I am able to dedicate more time to him and help him feel more loved. I feel like a horrible mom. I really have too much on my plate right now. But I dont know what I can do to have less. At the moment I will just have to take it, deal with it, and hope that I dont wind up in a psych ward or something because of the anxiety and depression. Urgh it is just so frustrating.

Interstim comes out tomorrow :(

My weekend with Interstim is almost over. I am not ready for this new relationship to end! Tomorrow I get to go back to my dr and they are going to take it out. I wish I could just keep it in until I am able to do the surgery for the permenant one.

I have been able to pee all weekend like a normal/real girl! you have no idea how amazing that feels. When you have been going only 2-3 times a day. and when you go you sit and try for about 10-20 min before you are able to pee. Then you pee a gallon of liquid. And there is still a ton left your bladder that wont come out when you are done!

This weekend I have used the bathroom regulargy, little-to no hesitancy, and nothing left in the bladder! I am so happy. But I am not ready for this to end. Tomorrow, I go back to being a grandma. :(

The tape that is holding my ports and stuff in place is really itching me. My back has been killing me too. They told me to try to keep my back as straight as possible so that I dont get the cables out of place. But man oh man it hurts soo bad. Also, my back and upper buttox are very sore. I have to be careful sitting down.

I took my Ambien tonight and cant go to bed yet. Waiting on a phone call. So I am not sure if words are coming out the right way or not! Ugh I havent slept good in a long time.

I am really nervous about tomorrow and what they will say. I have noticed a difference and I hope they tell me that we can put the permenant one in. But I am scared about the cost and what my insurance will cover. Will I even have the money to pay for what they dont cover?

Sometimes I just feel so inept. I feel as if I cant do anything right and that there is always something wrong with me. When am I ever going to be in good health? I guess I could be considered in good health. I am not dying, I dont have cancer. I am just in extreme pelvic pain from the endo, my lower back is killing me, and I cant pee (with the exception of this weekend because of my interstim). So other than that I am in relatively good health!

Tomorrow I get to wear my Interstim to school. I am really embarrassed about this device and what it does mainly because I have to use it. But at the same time I think that it is really interesting and amazing. I am taking this experience and turning it into show & tell and education. Instead of people staring I am just going to explain it to them. Much easier that way!

Nursing and Interstim

School is going really well. It has been crazy though, there is just a ton of information to take in and I miss a lot. The teachers talk really fast and I am not able to grasp everything they say. Luckily though between a few friends in class I have been able to get info that I may have missed.

We had a practice test to give us an idea of how the real test would go. Afterwards I felt really confidant that I had done a great job. It seemed as if everyone had the same answers. Well, the results came back and I made a 68 I was bummed. The passing grade is a 78. 77 or below is considered failing.

I have been studying my butt off, and the questions I missed were because of stupid stuff. I really kicked myself in the butt for that.

We took our real test 2 days later and I made an 82. I wish I could have done better, but I was just glad that I passed. I felt really bad for my bnbe (best nursing buddy ever). She made a 74 and had to do remediation. She studied so hard. But the test is not like "what is the definition of...?" It is critical thinking. It gives you a situation and asks which is the best or what you do first. All of the answers are something you would do, but you have to choose the best answer so it is difficult.

We had a surprise drug test on Tuesday. That morning I had draken 1 bottle of water, 1 glass of apple juice, and 1 glass of coffee. That is more than enough to make someone want to pee, but for me its a no go. So, the teacher comes in and says dont get up, dont leave your desk, we are doing a drug test. Luckily I had 2 bottles of water in my bag so I started chugging.

Lucky me, my name starts with a C so I was called pretty quickly. I told the lady doing it that I have bladder problems and she just told me to sit and try. I really dont think she believed me. So, I sat there for 20 minutes pushing and trying to go. I know that any normal person would have been able to if they had drank as much as me, but I was not. I couldnt go. I pushed and tried so hard and it wouldnt come.

What was worse, about 10 minutes into me trying, the other lady steps in and says "We need to get someone in here who can pee." That really hurt my feelings. I felt so bad, so inadequate. So they started bringing in other people to pee. After about 20 minutes of sitting there it finally came. I was so glad, but so embarrassed. I just wish they had let me wait until my bladder was ready.

I went to my urologist on Thursday. My retention is getting a little better, but I am still having problems feeling the senstion when my bladder is full. I have to wait until I am about to explode before I can pee. And even then I cant get it all out. Sometimes I can, just depending on how long I have had the sensation to go, but not always. Its really weird.

So, the dr is going to try an Interstim. It is like a pacemaker for the bladder and colon. It sends electric signals to the sacral nerves that tell them to work. On Thursday he is going to give me a temporary one. There will be probes that will go under the skin of my back and a huge batter pack that will be taped to my back. I will have to wear it for 48 hrs. If it works that means that I have nerve damage and would explain my retention problems. If it works, then he will put a permenant one in. The permenant one is the size of a credit card and goes into the skin of my back. You cant even really see it but I would have a small scar from where it was put. That one gets a remote control so you can turn it off and on, and control how often you get the signals.

I am really excited about this and hope it works. Its kind of cool thinking about it. I am such a dork, but I am tired of taking flomax. I feel like such an old man. I mean I am 27 and the only reason I can pee is because of a prostrate drug. It is just frustrating.

If this works, then I will get a medical card that I will have to carry around. It is metal so that means no MRI's and no metal detectors. Could you imagine getting an MRI with metal in your back? OUCH that would hurt tearing out of your skin!

So, wish me luck that this treatment will work. My loving hubby is getting frustrated too. He was hoping that I would be better by now, and I was too. URGH!!!

1st Lupron shot

So much for blogging every day! Life caught up to me and I have been missing for a week. I was totally into it and ready. The first night I missed, I was just exhausted and decided that I would catch up the next day. Well, because we live in the boonies, our internet works when it wants to, so the next 2 days we were not able to get online. I almost had a heart attack. I didnt know what to do. No facebook, no Cafe World, no YoVille. I do not know how I survived!

I survived my 1st week of nursing school. I know it is going to be tough, but all of the instructors are incredibly nice and they seem as if they are willing to help you succeed in any way that they can. So, that is very nice. We have our first check offs on Tuesday, the vital signs. So tomorrow I will be practicing with my lab partner.

I got my 1st lupron shot yesterday. I was really scared and MEGA intimidated by the needle. That thing was freakin huge! But luckily it was just for looks and only a smidgen of it wound up in my hip!

The shot made me kinda light headed and I started to get a migraine, but luckily it quit before it could progress.

Did you know that each Lupron shot costs $1500??? Thank goodness for insurance, I only have to pay $10. I will be taking Lupron for 6 months.

Today has been a wonderful day. This is the first relatively pain free day I have had in months and months! I started to feel some pain towards the end of the evening. But thats ok, because normally I feel it from the moment I wake up.

I am really excited about this treatment. I am hoping that today is an example of days to come and not just a tease. Today I had energy, I felt like dancing, I actually cleaned my house! If only there are more days like today to come!

Today it was cold! Very little snow on the ground, but it was flurrying on and off. Schools were closed...again. Logan had fun at home though. We all slept in and it was really nice. Logan loves to cuddle with us in the morning, well, we enjoy it too!

The urologist called me and my procedure is Friday. Of course they scheduled it on the day I am going back to work. Since they are putting me under, I will not be able to work that day. I called my boss to tell her and she seemed kinda peeved, but told me that I wont have to work that day. So, I hope she is not terribly upset. But I know that something is definetly wrong. My back has been hurting really bad, well I say my back but I am sure its my kidneys. Today I am having a lot of pain in my belly and pelvic area. I am really tired of always hurting. I am trying not to take the pain medicine, but if I dont take it then the pain gets out of control and nothing helps. Ibuprofen helps a little bit, but it makes me sick to my stomach. Plus, I cant take it right now since I am having that procedure done. Tylenol does nada. I hate asking the dr for more pain meds, but how am I supposed to get through the day? I havent been able to sleep well at night either. It takes forever to fall asleep, and then I wake up several times.

Well, I am hoping that this painful journey will end soon. I love my hubby, but he doesnt deal very well with my recent health issues. Who can blame him? There has been a lot thrown on me in these past 5 months and he has had to take a lot of responsibilities, things that I normally do (cleaning, cooking, etc). Its not fair for him with all that he already does. So, I really dont tell him everything that I am going through. He only knows bits and pieces, I dont want to freak him out. But I am really scared, I hate that I feel this way every single day. I really thought surgery was going to help, and in a way it did, but I am still hurting.