Anger · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength · Stupid Stuff

Fighting through…

I’ve been trying to figure out a way how to approach leaving the rehab facility and continuing on at home. Sad to say, the ball was dropped once I left. I truly feel like I was just a body to fill a bed. Since being home, (March 23) I’ve had exactly four in-home physical therapy sessions. I’ve seen the pain management/rehab doctor twice and was told I would have more rehab appointments. No one has called to set those up, and when I call, I never get a return call.  So I am taking the bull by the horns, so to speak, by bustin’ my own ass at home. I wear my Velcro arm weights and do arm exercises daily. I’m doing my best to strengthen my core. And when my husband feels like it, he helps move my legs around for me.

Right now I’m dealing with another wonderful bacterial infection in my bladder and kidneys. Because of the bowel section they used to build my urostomy there’s always a little bacteria that ends up in my bladder. I’m not gonna lie, I think it’s stupid AF that they use part of the bowel knowing it has bacteria and can cause problems. I’m not sure why they didn’t choose another way to build the urostomy. hmmmm I was told by having the urostomy done it would stop my infections etc. Well slap me silly and call me stupid, but it’s made it worse. I have to take a daily antibiotic, Nitrofurantoin, twice daily every day for the rest of my life. Last year I had bladder stones and kidney stones which were all surgically removed. When my urologist went through my stoma with a camera it was like looking at rocky beach inside my bladder. She said she’d never seen so many bladder stones. The removal of those wasn’t that hard. A tube was inserted through the stoma and they were vacuumed out. The kidney stones were a whole nother story. I went in for an outpatient procedure to place the tube into my left kidney which would stay there for five days and then they would vacuum those out. I ended up staying in the hospital for five days. Then when they went in to take out the kidney stones, they could not remove all of them so the tube had to stay in my back for another five days. Unfortunately it caused me a lot of problems and constantly leaked, so for the five days I had to be put into a nursing Center. When I finally had the procedure to remove the kidney stones, all was well. But alas, I have more bladder stones and kidney stones yet again. So what, do I have to have surgery every year to remove these? I feel like I get two steps forward and I’m thrown four or 10 steps back.

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I know my newest bacterial infection is due, yet again, to the wonderful piece of bowel in my urostomy. Then of course, since things don’t always go as planned, Walgreens where I get my prescriptions fucked up. LOL my prescription for Augmentin was called in on Friday. On Monday I called Walgreens as it seemed to be taking quite some time. They said they were out of stock and would be getting it in the next day on the shipment. So I called the next day and was told they weren’t getting any at all. That my doctor wanted the name brand and they do not carry the name brand. They said they would call my doctor and see if I can use the generic! Okay… why the fuck didn’t they do that in the first place and call me. Meanwhile I’m feeling awful! I went to the doctor because I knew my fatigue and sheer feeling like I was dying was not due to my MS. Not everything is MS!! So I kind of needed this medication right away. I was curious as to why no one called to let me know this. And of course dead air on the other end of the phone. To make a long story short, I finally had enough and yesterday, Wednesday, I called Rite Aid and they called Walgreens and within an hour I had my medication. We have used Walgreens for forever, but since the main pharmacist left a little over a year ago the service has been crap. So now, buh-bye Walgreens!

I will say that my new outlook, trying to keep the positivity floating, helped me through the situation. I didn’t lose my shit, too much. I just chalked it up as another little bump in the road that I would get through. I really believe it helped me to not feel worse by causing me added amount of stress. I will always find a way to make it through the rain. We must remain strong in times of trouble. We must have courage to keep fighting! Those are the markings of the true warrior!

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Always remember to have courage and be kind!