*Learning To Live & Living To Learn *

 I am definitely in a flare today. I have been getting up 4 times every night to pee and last night the count went back up to 7 or 8 times. I am exhausted. I love my sleep and interrupted sleep is worthless. Almost feel like I haven’t even slept at all. My bladder is burning, and my muscles keep tensing up. I can feel my PFD acting up like crazy cause my bladder spasms seem to set it off. It is going to be one of those days. Movie and relaxation. I really need some new hobbies that I am able to do. I am starting to bore myself.

2 months ago · 1 note

2 months ago · 3 notes

As I sit here watching hgtv my mind keeps drifting off worrying about tomorrows treatment. I do know what to expect from last time, yet the pain of these treatments is excruciating. I do have hope that this could help, but I also fear that this won’t help and will in turn be for nothing. The downtime from these also kinda throws me off a bit. I hate being restrained as is and this is not something I would wish on anyone. I feel guilty for complaining sometimes. I have so many strong days though that i feel it is only healthy to get some things off my mind every now and then.

3 months ago · 2 notes · Source

IC Doc: Finally a decent appointment

 I went to my IC doctor yesterday and this time it seemed to go much better. I really think it does make a difference having someone there with me. I told him I felt like the vistaril was causing me to flare up. The plan now is that I stay off the vistaril again for a few days and I can try it for a third-fourth time if I want to. I am not so sure I want to endure this flare up again though. I am now taking flexeril,gabapention,lithium,minipress(which is for my nightmares , but doctor said that they used to use it in urinary problems with men back in the day..so it might help my IC too) I know I’m not a guy but still, he said it might help. The reason they quit using it so much is cause it was causing people to have low blood pressure. It is actually used for that reason. My blood pressure has been fine thus far. Which is good!!! The doctor did a sono of my bladder to see just how much I am retaining and I  was retaining 1oz of pee even after I went to the bathroom four times before that. My bladder capacity when they filled it up with solution to see how much it would hold at the max..the VERY max..I mean them pushing me to hold more and more was only 4oz. That means my retention is about a 1/3-1/4 of my maximum capacity. Most people hold 100-110oz. That is insane.

4 months ago · 3 notes

Flexeril

 Doctor just put me on flexeril. I am thinking this should actually help some for a change.

4 months ago · 0 notes

These meds are giving me a serious case of the munchies.

4 months ago · 1 note · Source

Guess I am starting vistaril back up tomorrow.

When I tried it before I felt like it sent me into a flare. My psych is starting me on it for anxiety. My urologist had me on it before. I figured that since both doctors have now tried to put me on this med, that I owe it to myself to try it again. I hope I was wrong about it throwing me into a flare and I am praying this helps. Stay tuned….

4 months ago · 1 note · Source

Reality in a nutshell

  To be quite honest I almost feel as though this vicious cycle of hurt, pain and open ended questions will never have a visual closure. I feel that with our ever growing population that someone out of us all would have some of these answers that many of us so much seek. I’m not sure what the meaning of these new found issues may be or what it may mean for my future at hand. I miss waking up and not having any real worries in life, besides having to figure out what to wear to school that day or what new rumor would be told. From a very early age it seems like we are almost thrown into the notion that everyone but ourselves is untrustworthy. We get let down time and time again after seeking such help from a very early age. Thus being true I do feel that it isn’t ‘just’ to say the very least. We were made to be as units not as loners out to take on every single challenge as one person trying to make it count as if it were a whole fucking army.

  Today, I sit here 28 years old and cannot help but to wonder if I will ever the person that I hope and pray to be. My weakest moments seem to hit like a train.  My health deteriorating and any chance I may have had at a true future as far as any sort of income or being able to provide even the simplest things for myself has completely and utterly diminished. I never asked for any of this. Yet, I sit here everyday waging this war in my head trying to figure out how exactly to fix it. I would be lying if  I were to say that it wouldn’t be easier to just allow myself and my future to fall into the cracks. It becomes difficult to do the right thing, when the right thing isn’t always so clear. I feel as though even avenue has been taken and every door that I know has been opened. It is people like me who get forgotten about. Who aren’t getting the help that they so much seek.  Don’t doctors have degrees for a reason? Isn’t that reason to help us and to help provide us better quality of life if it so shall fit? Well, why then are these doctors,  and so called caring individuals not there when such help is sought after. The fact that these people have the means to help and do something and make that choice not to do so all comes back to what I was saying before. Generally, when it comes down to it…we have only ourselves. Society , as it is today needs some serious help as a whole if we all seem to think it is okay to push people to the side as such. I am starting to lose my faith and hope that things will ever get better for me and am just simply waiting to be proven wrong in the midst of this chaos.

4 months ago · 1 note · Source

Feeling like ish

  I was being lazy this morning and didn’t want to get up to pee yet again, so now my bladder hurts more than ever. I was already flaring and now I’m beating myself up knowing that I caused myself this added pain. I should have gotten up instead of trying to hold it so long. It’s hard not to want to stay in bed when I had been up and down peeing all night as was. This really sucks.

5 months ago · 1 note · Source

I went into the SSI office the other day to fill out more paperwork and had to wait to see my worker for over an hour. Of course, I had to pee within like 10 minutes of being there. They had a out of order sign on the womens bathroom so I wait in line yet again and ask the lady at the front desk what I’m supposed to do. When you have IC you gotta go when you gotta go there is not always that choice of “holding it” or “waiting”. Well, when I asked the lady at the desk about the bathroom she got an attitude with me and said ” Whats wrong with the bathrooms out there that you can’t use those?” she said it so hateful like I was going up there trying to make my way into a private bathroom or something…like I was too good to pee in there. My response “There is a sign on the door that says out of order. I have a bladder condition which is why I am here in the first place. I cannot hold it and I need a bathroom.” She then tells me to use the mens restroom and that it has a lock on it, in yet another hateful tone. I was unable to hold it long enough to argue with that rude bitch so I went in the mens bathrom. It smelled horrible of course and get this..there was shit..yes..SHIT ,literally..SHIT on the wall of the bathroom. Not only did the SSI office not have a properly working womens restroom but they send someone with a bladder condition more prone to infections in the first place into a filthy dirty beyond disgusting bathroom. There has to be some sort of health code violation or something against them. It’s ridiculous. Not only do they constantly mess up my paperwork up but that right there was enough to make me lose it.

6 months ago · 4 notes · Source