Remember these from July 2019. My wonderful bladder stones thanks to my wonderful urostomy. So I was supposed to get this taken care of back in August 2019. Didn’t happen because that’s when I had to go to the hospital because I thought I broke in my hips and my back when I was trying to get in to rehab. Thanks to Independence Blue Cross not allowing me rehab I was unable to get out of my bed so we kept rescheduling. Now with the virus I was rescheduled twice, and today they called to tell me it had to be pushed back to May 26. But it’s really only a tentative date because it may change again. So basically I’m filling up with so much bacteria and that’s probably why I feel a little clammy and not well at times. I try to do everything right but nothing ever goes right. Possibly because I am left-handed. 😂😂 I’m joking… Or am I. 🤔
I am trying to find the humor in all of this because that’s the only way I survive. But man, it’s getting harder and harder to laugh. I know I know, I should be glad because I’m alive. Am I alive or do I just exist. You’ll be the judge. 🤷🏻♀️😕
I love the beach! I grew up going to Santa Monica Beach all the time and I just love all beaches. I love the water, Pisces here, and I love or at least used to love feeling the sand beneath my feet. I don’t love the beach however when it’s all inside my bladder. 😮 Nope… DON’T like it one bit. This issue happened two years ago and it looks like it’s going to have to be taken care of every couple of years from now on. 😭 You see, when they built my stoma for my urostomy they used part of the bowel. Can you say infection much!? I guess I didn’t really understand the whole process until after the fact. In all honesty there wasn’t much I could’ve done anyway because it had to be done. Thank you multiple sclerosis you fucking piece of shit disease. I’m sorry off-base a little, so now my bladder looks like you’re underwater on a rocky shoreline. it also looks like, I think, a dinosaurs 🦖 lair where they keep their eggs. 😅
And… it looks like there’s an alien and a set of twins hanging out in my bladder! I think I should ask for rent or something. 😂
On August 7 I will be going in and they will be inserting in a much larger tube into my bladder to hopefully clean out all my little stones. I’m a little bummed because I was hoping I could keep them and make a necklace or something out of them. I know, I know, gross. 😜 I have to find the humor in all things or I really wouldn’t want to be here anymore…
So that’s what’s been going on with me. Not much change in the paint department and I’m still pretty much trapped in my bed. But I am working on it and I hope to remember to blog a little more because I miss it. 🖤
Yesterday I went to see my neurologist. I finally got to use my new wheelchair.
When the doctor came in the room he looked at me and said, “You look so good!! No one would know you have primary progressive MS.“ I’m never really sure what to say when I hear something like that, so I just smile. We discussed the infusion, the newest DMD (disease modifying drugs), Ocrevus. He said he would get an appointment for me and the drug rep as soon as possible. He is very worried about the ‘serious‘ side effects. We all know that the medications for MS do come with very serious side effects. The problem for me, is my urostomy. I am prone to kidney and bladder infections as well as kidney and bladder stones. Because my immune system is overactive, it’s fights off some of the infection. If I am put on a medication that suppresses my immune system, I could very easily become septic. So I’m kind of screwed. At least he is giving me the option and I will be talking to the drug rep about it. Hell, I haven’t had a cold or a flu for so many years thanks to my overactive immune system. The only time I have gotten sick was when I was on a couple of the DMD‘S many years ago.
Then I did my normal, “I need prescriptions“. The main medication I need is the daily antibiotic I have to take, twice a day, for my issues. Rapture! LOL and we definitely cannot forget my antidepressants. Without those no one wants to be around me. 😈
After that we went to Walgreens to pick up my new prescriptions and then we went and got some dinner. I was only up for about three hours, but it totally kicked my ass. Today I am running on empty.
Sadly that is what MS does to us… At least the majority of us. It’s very rare that we can go and do things, and then be able to go and do things the next day. It’s very depressing, especially when you were someone who was always on the go. This disease changes is and takes away everything we once were. That is why we must be stronger than our MS. We must fight it every day, which sucks hairy balls, but that’s what we have to do. And we do it because we are warriors!
Have courage and be kind
** I will be back with my positivity journey very soon. So much love to all! ♥️