bladderpainsyndrome

www.urotoday.com/recent-abstracts/pelvic-health-reconstructi...

I have an appointment with my primary doctor who is also an internist. It started in June with some of the stupid questions she was asking me, like if I was doing something with my hands to make purplish markings on my bicep. So I just knew at that point something had changed. So I have an appointment with her tomorrow. This is a follow up from last month because “she” diagnosed me with Livedo. She never explained what Livedo is but blamed it on my meds. I’m on 18 meds a day. I have auto-immune disorders (several) plus mental illnesses. Some of those are supplements. I really know what the problem is, I’m on a pain med. I’ve been on this pain med since 2010. It’s going to be 10 years and never failed a drug test. Doctors never review those details they just look at the list.
So my primary referred me to a dermatologists. I was lucky to get in the next day with the Dermo. The Dermo is in the same building and insurance network. This Dermo sat down looked at her computer and said it’s your meds that has caused you Livedo. She said this without even examining me. Why in the heck did I get naked for then??? I still don’t know what Livedo is. Neither of these doctors ever explained it. The Dermo is ready to walk out the door and I said so what’s next. The Doc said if you start getting ulcers you need to come back. Also my left bicep has been swollen since June of last year with the markings (I mentioned earlier)of Livedo the ones I was making with my hands. (Per my Doc ) and I asked her so why is my bicep swollen? Huh? I’m really not sure? and left . Closed the door. Bye Bye. I’m asking why did she treat me this way? Because she read my primary’s notes, which probably said it’s all in my mind.

So I really want to keep this appointment and really really want to make it count. My whole goal is to stay strong, on topic, and let her know that she can’t treat people like this. Of course I want to do it as nice as possible, I just don’t want my emotions to get away from me.

So I need to know what would some of you do? How would you do it? Should I ask her straight out what or why she treated or thinks of me? I feel hopeless. I would usually never go back and find someone else. Which in the end I will find a new doctor but I want her to hear what I have to say. I want this stupid stereotyping to stop following me. Hopefully I can go back to make her at least listen to me so next time she will think differently when a patient comes in like me.

#Fibromyalgia
#bladderpainsyndrome, #ChronicMigraineSyndrome, #Bipolar , #PTSD,#BLPD,,#ChronicPain,#CFS

My #BrainFog these past few weeks has really reached new levels. I can see the word I want to say in my head, I can visualise it, but can I get the blasted word out? No. I also used to be able to do a medium sudoku, had to abandon an easy one yesterday after only about 20 minutes because my brain just couldn’t do it. At work before the Christmas break, I had to work out someone’s date of birth... I had their passport right in front of me and I still couldn’t tell my colleague the date of birth 🙄 I have gotten through the past few years of #bladderpainsyndrome #InterstitialCystitis and in the past 9 months #Fibromyalgia alright, but increasing amounts of #FibroFog / #BrainFog is really started to grind my patience... any tips on exercises or coping with this #mightywarriors? I’m not ready to give in and vacate my seat in the house of knowledge and wit of #ravenclaw 🦅 (

I take a lot of pride in the fact that I’m a still training to be a lawyer even though I have #bladderpainsyndrome / #Fibromyalgia etc. It’s not without extreme pain and at least fifty daily internal battles. I’ve got some reprieve now because our office closed for Christmas and it’s guilt free time off work being sick. But the shittest part of fighting these battles is how other people are just as much of a battle as your symptoms. Many members of my office have been spluttering for most of December. The dreaded winter lurgy is just something we all deal with, right? Yes, however with chronic illness it’s more than that. I can get over the fact that they’re moaning that their throat hurts even though it feels like someone’s booted me in the bladder and is pricking at my urethra and pulling chicken wire around my jaw, joints, ribs amongst other things. I try my best and I feel I am quite sympathetic. However, what I can’t and never will be able to get over is when they are sick, they say oh no, it’s not possible for me to take time off for sick leave. WELCOME TO MY FUCKING WORLD. What you don’t see is that during the cold I have now caught from you, my #Fibromyalgia flares up ten time’s worse than usual. I get mouth ulcers, sty’s in my eye and my body’s latest shut down means I also have a skin infection. All because you won’t take the day off sick because you’re too busy. Guess what. I have no choice to take time off even if I’m busy. Now you’ve made me require more time off. Instead, I’ll be forced to take double or even triple the time it would’ve taken you to get over it. Thanks humankind. You not only make shit worse for chronic illness warriors through your lack of understanding (no funnily enough I never realised cranberries would cure my equivalent to stage three bladder cancer pain, thanks so much...) but also because you make the workplace mindset that you come into work even when you’re sick. Humans do this. This is human culture in 2019. I’m slowly finding my #ChronicIllness voice and becoming less ashamed of it. So in 2020 I vow to be more outspoken and less ashamed. #2020 -the year for chronic illness warriors.

Some mighty’s may remember my moaning about the disgusting CBD oil and my intention to inject the oil into capsules. My mum actually ordered some pre-made capsules from health span and let me have a few. I am pleased to say that I have noticed a difference in relation to #ness #Fibromya pain, it’s not gone but it does seem less, no particular change to #bladderpainsyndrome #InterstitialCystitis symptoms... will keep you posted 😏

so, I’ve had to stop taking the oil. I genuinely was heaving when putting it under the tongue, however, I have now ordered (recommended by a fellow Mighty user) gel capsules and plan to put the oil inside manually. I’ll let you know how this goes... I did place a lot of faith in the oil and honestly didn’t notice an awful lot but hopefully after a bit of commitment and me not being a child about it the manual capsules will help me. #bladderpainsyndrome #InterstitialCystitis #Fibromyalgia

Can’t get over the taste. It’s so bad that I actually retched today putting the stuff under my tongue. In my last post someone suggested buying gel capsules and filling them with the CBD. Amazon tonight has taken yet another chunk of my cash because I purchased 500 empty capsules. Hopefully by the time I finish the 500 capsules I’ll have started feeling relief. The only thing I am noticing is my mood - I seem to be more patient than usual (apart from first thing in the morning) and feeling a bit more confident in myself. Another thought - today my physio pointed out that when I am bored, my #bladderpainsyndrome is at its worst... anyone else noticed this?

so I have now had 6 doses of CBD oil. I can’t get over how foul this tastes. I have put the oil in a shot of milk and treated it like a Jaeger Bomb... and then necked a large glass of milk from a separate, untainted by CBD, glass. I haven’t really noticed a lot of difference in my #bladderpainsyndrome or #chronicbladderpain and I am still having the jabbings of #Fibromyalgia . I am inpatient but I need to learn to be patient as I’m sure #CBD doesn’t take only two days to work. Will keep you posted... 🥛

I know I shouldn’t compare my #bladderpainsyndrome #InterstitialCystitis to anything but when I’m mid flare up all I do is start trying to describe it or find words to try to describe it, words like acid, slit, sandpaper and even things that are really awful and I shouldn’t compare it to but this is what I imagine FGM feels like.

I finally had my appointment with the urologist. They looked inside my bladder, which was really strange to see in the screen. I have never seen any internal organ in such a way. There were red lines, like veins. They were short but very visible. There is also inflammation in one spot inside my bladder. They extracted one of the red lines which look like veins and sent it for a biopsy. I will find out what it could be in three days. Oh boy oh boy. Man am I excited to find out more that’s wrong with me. However, on the bright side, I may finally be receiving some answers. With answers comes solutions. I pray I am finally coming close to a solution to this problem. I may finally be able to go out and find a better and more meaningful job, something I’ve always wanted. Maybe I can finish school? The possibilities distract me from the discomfort of having a vein pulled from the lining of my bladder.