Neverending Storm Pt 3

With any storm in life, big or small, you need a buffer......tricks to help keep as much normalcy as possible. For example, Rob [my husband ] and I always have a date day every week, sometimes two. Obviously we can't do that right now, so we improvise and have it at home. Date night at home consists of getting our favorite takeout, lighting some candles, and watching a movie. There's been a few different things we've done, you just have to find what works for you. You have to keep being intentional about doing the things that bring enjoyment to your life and marriage. You don't quit having fun just because life isn't " just so." Intentionality  is part of the glue that holds things together, and being able to find the silver lining helps keep you sane. Plain and simple, don't get devoured by your demise.

Our weekly trips to Indy had some fun added in, such as stopping at a coffee shop, getting lunch together, etc. I would also have Rob just drop me off to my long appointments so he could run to his favorite bakeries and be able to have something from our trips to look forward to. He is VERY hands on and goes with me to all appointments. He's been nothing short of amazing! And yes, when he's done he comes back and waits with me:)

I had to go to Indy for bladder treatments in an effort to save my bladder which obviously didn't work. The treatment consisted of the same exact thing they do for chemo except for the difference in medication. When you arrive, you give a urine sample, then wait two hours for the medication to get mixed in the lab. Once that is done, they drape and prep you, put a catheter in to inject the medication, and you lay there for 20 minutes letting it "marinate" and then you pee it all out. It's called DMSO which is basically a bladder wash. We didn't know that it couldn't be done if there is infection, and when I showed up for my third treatment, we had to turn around after a two hour drive and head home because I tested hot for UTI. This was a huge problem because treatment kept getting interrupted. On top of all that, the treatments actually made me feel worse. I'd get fever, nausea, and about an hour after installation of the medication, bladder and ureter pain would get significantly worse and I would feel lethargic. It began to get to be almost impossible for me to pee on my own, so that's when I got the catheter. We went down to Indy for an appointment so I could learn how to self cath and that was a disaster!! I was in so much pain and it was so complicated it took three people to get the catheter in and that third person was my surgeon. He couldn't believe all of the sediment that came out once he finally got the catheter in. It takes a lot for me to cry and start hollering from pain and we were there! My pain level felt like a 12 and they had to call an ambulance to come get me and take me to Methodist Hospital downtown. So then, they decided to leave it in permanently and change it out every four weeks. I started passing a lot of blood and blood clots, and even more sediment. Infection ended up being even more of an issue. This all happened between July and August.

Meanwhile, I had other Specialists to see....GI, and Pelvic Pain Specialist. GI has been the slowest as far as getting anything done at all. Part of that is because of the first guy I saw in Muncie at Ball Memorial. He was a freaking joke and did nothing for me. Finally I got to the wonderful Doctor I have now. I had a procedure done with my Pelvic Pain Specialist called Trigger Point Injections to help with all the pain I was having from my pelvic floor. They sedate you and you lay in the same position you would for a pap smear. Then, they take a long needle, put it up your vagina and inject medication into every single pelvic floor muscle. That was the only thing I had gotten any kind of relief from so far along with them having me begin to put cyclobenzaprine and Diazepam in vaginally. Yeah, I had no idea you could do that lol! I also had gotten some vaginal suppositories from the compound pharmacy as well as a cream for the Urethra. Nothing was working other than what the Pelvic Pain Specialists were doing. I will probably have to have more Trigger Point Injections which I am fine with especially after the relief I got from the pelvic floor pain which causes a LOT of aching and pressure absolutely everywhere down south, even the rectum. As I mentioned before, nothing worked as far as bladder treatments go and it is more of a risk leaving it in than taking it out, so now here we are ready for bladder removal in 2 1/2 weeks. I'm so miserable I am ready and it'll honestly be a lot easier having a bag attached to my abdomen than futzing with my cath bag all the time. 

I will try to hop on tomorrow, but I have to see how I feel after the procedure. It isn't until noon and I will be sooooo ready to eat afterwards!!! Happy Halloween everyone and if I don't post tomorrow I'll be back Saturday morning :)