#interstim

After 3-ish years, 4 revision surgeries, and a lot of pain & frustration, my machine is finally out for good & I can live life slightly less cautiously!

Hi, im back after being in the hospital for a long time. I had a blood infection from my port, but im fine now. 

I have officially entered panic mode. Monday afternoon we are leaving for Michigan. I am so scared of the plane trip out there. I will have to sit uncomfortably for 7+ hours on a cramped plane. Sitting in a nice comfy seat for that long would hurt a lot, so I can only imagine the kind of hell that will be. When we get back I may or may not be better. I’m trying my absolute hardest not to get my hopes up, but I just want it, so badly, to work for me. I’m getting a pudendal interstim implant. They have seen a lot of success with other patients, including this girl, McKenna, I know. She is doing great now and is completely off of her pain medicine. I’m dreaming of that day.

What if it doesn’t work, though? I feel like I’m terrified to go because I’m terrified it won’t work. If it doesn’t work it will seriously be the biggest let down of my entire life.That’s why I’m trying not to be too hopeful. I’m trying to minimize the fall damage.

What if it does work? How do I even start to transition into being a normal person? I’ve gotten so used to not being able to do anything, so I lay in bed all day trying to distract myself from the pain. I’ve gotten comfortable with doing absolutely nothing most days. Also, there is no doubt in my mind that my body will not take nicely to easing off my pain meds. I heard that trying to get off of pain pills can be a horrible experience. Especially when you’ve been on them as long as I have.

O tratamento para hiperatividade detrusora (bexiga hiperativa) apresentou grande avanço nos últimos anos. 

Yesterday I was terrible at managing my anxiety, I was panicking till evening when my family came home and then I calmed down and felt like everything would be ok. My IC was quite good though.

Today even though I was home alone for a decent amount of time, hours, I managed my anxiety pretty well and even felt quite good just sitting at home alone working on stuff on my computer. The only problem was, my bladder had been feeling like relative crap allll day. I woke up with burning. It stuck around, in the evening it turned to aching soreness, a really unusual symptom for me, that’s still what it feels like. I have no idea why it feels this way, I don’t know what to blame. I don’t know how to fix it or feel ok again. I’m afraid it’s the supplements that I started trying a few days ago to help with my anxiety, 5htp and seriphos.

I just took some more 5htp to see if it makes me feel happier, and if it makes my bladder feel worse. If I feel even worse tomorrow I don’t think I have a choice except to quit the supplements and try and tackle the panic and anxiety on my own using meditation and exercise. I would rather be anxious than have a real damaged organ to be anxious about.

I just don’t understand why my bladder feels this way, its fine one day, and bad the next.

I have to go to the movies tomorrow with my friends, pretty much the most challenging thing I do with IC because it involves sitting in a seat I’m not comfortable with and trying to concentrate. I also am going downtown with friends on Saturday and then taking an hour drive to another city to visit some relatives of mine with Matt.

I’m so afraid that the happiness I’ve experienced over the last three months is over due to this anxiety and the fact that my bladder’s acting up again. I want to do so much the rest of this summer. I want to enjoy my time with Matt, I’m interviewing for a job, I’m supposed to go back to school part time. I can’t do that if I revert back to the way I was before April, with my bladder being such an issue. I also can’t do that if I’m riddled with anxiety to the point of panic and tears for what seems to be no reason.

I don’t want to be that person I was 4 months ago, I don’t want to lose all that happiness I had because until then, I hadn’t felt that happy since before I got IC. I don’t want my sickness to start defining me again. There are so many opportunities and things that I want to enjoy and I am not going to give those things up, I’m going to fight so hard for my happiness and just my capability to do the things that I want to do, whether it’s hanging out with my friends or going out on fun dates with Matt.

I don’t want this to be like last summer, where each attempt at happiness was a scary trial and often failed, ending in tears and a worried boyfriend who didn’t know what to do with somebody so broken except leave, where I was unable to hang out with my friends or basically leave the house.

I just wish I knew what set off my bladder today because I have no idea, it was quite good yesterday.

Will I be ok again? Yes. Will I improve again eventually? Yes. But right now I’m terrified because every second of this summer counts, and I need to be ready to go back to school and handle that stress. 

I want to get the stem cell treatment from Dr. Lander to help my bladder rebuild its lining. That’s what the stem cells do. It’s just very expensive, like $8,000 expensive, so it’ll have to be a last resort but I feel like it’s something that would really help and allow me to put all this worry and basically disability behind me. To be myself again and enjoy my life with all it’s normal worries about grades and relationships and work.

I was so happy my whole life, here were ups and downs and difficulties, but IC did take that away from me in an instant in a way I didn’t think was possible. I found my happiness again this summer, I can’t lose it but I can feel it slipping.

I just need to know that I’m going to be able to do what I need to do:

- See my friends

- See Matt

- Have a good interview and work at the job I wanted to

- Go back to school

- Not feel as if I’m forcing myself through all of that and living a nightmare like I initially was when I first got IC and was in a relationship as well as going to school.

I would be a lot happier if my damned bladder didn’t decide to feel like shit ALL day for no reason, no reason at all that I can discern, I’m not sure what to do. The past few weeks I’ve been frantic about repeating old treatments and trying new ones. I’m scheduled for interstim surgery in September because if I need metal and wires in my back to function I’ll do it, I just want to be myself again.

Fuck IC. Give me my life back.

I need to know that it’s going to be ok. That I can still go out and have a life. Tomorrow night will be a real test of that. My IC needs to be in check and my anxiety needs to be in check.

It’s going to be ok, I still am me, I’m still fun, I can still go out and have a good time, I can still maintain relationships. This discomfort will pass and I’ll wonder why I was so worried. My anxiety will soon be a thing of the past and my IC will slowly improve again until it’s completely gone and just a bad memory. 

I’m going to spend the rest of this summer having fun with Matt and making him love me, which I think might actually be working based on some things he’s been doing lately and the way he’s been communicating/acting.

IT WIL ALL BE OK. THIS TOO SHALL PASS. Bladder pain is probably just a reaction to the Seriphos which I will stop taking, the stress which will improve, or the new electrical stim therapy I’ve been trying because my symptoms have been iffy ever since I started, though they were slightly iffy before. Luckily I only have one more treatment of that before calling it quits, maybe I should just call it quits already, it really doesn’t seem to be helping at all. 

I also increased my dose of nystatin, I can cut that back down just to be safe.