Interstitial Cystitis

I have interstitial cystitis and lately it’s gotten worse so my doctor wants to switch me from Toviaz to Myrbetriq. The only side effect she told me about was high blood pressure. I have nightmares and when I wake up my heart is racing out of my chest. I am afraid to switch to the myrbetriq because I am scared a may have a stroke. Any suggestions? #InterstitialCystitis

This might make me sound ableist, but do any chronically sick people still go to concerts? Specifically, people in wheelchairs? What has been your experience?

I’m into bands like Motionless in White, Skillet, Bad Wolves, Five Finger Death Punch, Disturbed, I Prevail, Starset, Breaking Benjamin, etc… I just wanna know what people’s experiences were like at these sorts of concerts, for an ambulatory wheelchair user?

I can walk around and whatnot but standing for long periods of time is a sure fire way to having me end up on the floor unconscious or worse.

I’m asking because I’ve never been to a concert and I have no idea what it’s like, but I do want to go to one eventually, when I have the courage to do so.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #POTS #EDS #EhlersDanlosSyndrome #NAFLD #BPD #IBS #InterstitialCystitis #PTSD #Diabetes #Migraine #WheelchairUser #ambulatorywheelchair

Very painful. I've tried everything
from #botox to #interstimImplant #
Insomnia #westicktogether
#InterstitialCystitis #warriors

Hi all 🥰
I actually napped
I usually have my good pal Insomnia My nightly visitor. Honestly, I'm really exhausted because I cannot sleep. I am up all night and if I push it it makes me very nervous. The reason because It's too nerve wracking to think I have to focus on trying to get the sleep 😴 I make myself really anxious to force the issue. Self Care is very important to me and I have to distract my attention on other things. I keep a few of my favorite items by my side so I'm not fixated on getting to sleep. If I am fixated I can't relax however my activities are quiet one's, like reading, coloring, watching TV with the captions on and the volume very low so I don't wake my dogs who are fast asleep. I am usually on the couch because I'd go insane trying to sleep in my bed. Not good for me anyway. I may email or research something I'm interested in. I Like to research. I read magazines or my books. I read one or two every week. I read about many different subjects. Nothing that will spike my anxiety. Im a die hard Rom/Com reader and also into the paranormal, ghosts, (yes I love to ghost hunt) I like to draw so I distract myself with quiet activities to stay in relax mode. I don't want to wake my dogs up. It is part of my self care. I need to nurture myself. If they see me up they think it's morning...there is a woman upstairs so we are quiet. She is up too. I hear her footsteps. It's about me when I have quiet time. I am more relaxed at night. It is quiet, dark nobody texting or calling me. I live on a main road which houses the fire dept and I don't hear them. I am an Introvert. So I'm chattering away like a monkey 🐒.
So I do not work my career because I had to go on disability. I am a Therapist & miss it terribly. I have anxiety depression and physical condition called Interstitial Cystitis, pelvic nerve dysfunction and Pudendal nerve disorder. I worked with kids aged 3-21 & their families. I am not stuck in am office which would make me crazy. Some people like that and others don't. I would go to schools courts training school and I ran two support groups. I did Art Therapy with very young kids and a teen girls group.
I am the group leader of Interstitial Cystitis in my state. I take support calls too
I am active in my treatment and I am tired (& thankful for my medical team) of going to the doctor every two weeks for bladder installations which a cocktail of medicine into my bladder. I'm tired of being a slave to these appts for instills of meds. In the long run it'll be good for my bladder.
Ok l probably bore you 😉..I have to jump in and swim around and get to know as many awesome people here as I can.
Please I must ask about bullying. Usually larger forums are a breeding ground for bullys. I need to ask if it's a big problem

please tell me message me and Also whether it's taken seriously. (I word that wrong). I am confident that bullying is dealt with here. I have to ask how much of a problem it is here. I and a few others leave where we were & I will never tell anyone which mental health site it is. It's not proper. Myself and some members leave because it was a very toxic environment. I will never say

So, I have quite a few chronic health conditions, but the two that give me the most pain are Ehler's Danlos Syndrome and Interstitial Cystitis.

As a result of this, I live in pain every day of my life. But I have good days and bad days. I have flares.

Today, strangely, is a very good pain day. It's nowhere near as far as it usually is. If I were to put it on a scale with one being the lowest and ten being the absolute worst... I'd give it a 3. On the average day, I tend to be around 5 or 6. So being feeling like a 3 is... Weird.

I'm so used to the level of pain I'm usually at. But today I feel so strange. It feels like something isn't quite right and it honestly makes me feel very nervous. And I have no idea why. I feel ridiculous.

Does anyone else feel like this when their pain is better than usual? I feel like an idiot.

#chronicillnesswarrior #ChronicPain #POTS #EDS #EhlersDanlos #posturalorthostatictachycardia #InterstitialCystitis #BladderPain #Jointpain #IBS #cramps #NAFLD #LiverDisease #Depression #Anxiety #BPD #Weird

Over the Christmas period there was a LOT of family drama that seriously upset me, which led to me comfort eating quite a bit.

In my last post, after my weight check and diabetes review, I proudly told you lovely people that not only was my diabetes unaffected, but that I’d also lost 19lbs.

Well. This morning I came across a couple of pairs of size 16 skinny jeans I bought myself just before the pandemic began. When I bought them at the time, I was really pissed because I couldn’t even pull them up past my knees/lower thighs. I threw them to the back of my chest of drawers and sulked.

So, I stared at the jeans, a bit disgruntled. Before finally deciding to give them a go…

And… They fit me PERFECTLY. I am ecstatic! I was once a size 20-22, and now? A 16! You can bet your ass I did a victory dance in my room. 😂

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #InterstitialCystitis #Diabetes #Migraines #IBS #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BPD #BorderlinePersonalityDisorder #WeightLoss #SoHappy

I am agoraphobic. If I do go out it’s with my mom’s home health care worker in a car, or with my mom to help her with her doctors appointments. I have been trying to have phone or video visits with all of my doctors. My whole body hurts. My primary care doctor said that the pain center would treat the pain but not the cause of it. I have a spinal stimulator. So he wants me to go back to the spine center. Now my insurance is saying they won’t pay for Toviaz, my interstitial cystitis med. I’m exhausted all the time but I think raising my Gabapentin would help with my pain though it may add to the exhaustion. I try not to complain but I am lost. So many meds, still so much pain and no energy #ChronicFatigue #FibroFog #Agoraphobia

Hey, everyone. How was your Christmas? Mine was pretty awful, honestly. I'll try and explain it as best as I can.

Around 4 years ago, my mum was talking to my big sister (her name is Dawn), and she told her about my health conditions/problems. Dawn then proceeded to accuse me of faking my health issues. Despite the many scans and test results clearly showing they are real. And then, shortly afterwards, she said that any gifts or presents I buy for people for birthdays/christmas (and everything else) are worthless because the money comes from a 'government handout' (disability benefits). After learning this, I refused to talk to her unless she apologises. So, we didn't talk for several years.

My little sister (Jess) gave birth to my nephew in 2021, and I love him very much. Since Dawn doesn't live near us, she was only able to visit this passed Christmas, and she stayed at Jess's house for two weeks.

Originally, before Dawn announced she would be coming, the whole family was going to go to Jess's house for Christmas dinner and whatnot... But once she booked her tickets and everything, Jess said that I wasn't allowed to go to the event. I wasn't allowed to spend time with the whole family. Which REALLY upset me. So much so, that I seriously comfort-ate for a couple of weeks. I was binge-eating whatever I could get my hands on. And I spent the entire of Christmas day curled up in bed watching stuff on my laptop. It was my first Christmas alone and I hated it.

Anyway, that leads up to the good news. I was really expecting my diabetes to be so much worse, and I was expecting to have put on a lot of weight. So, I reluctantly went for my weight and diabetes check last week. After they recorded my weight, they told me that since last July, I've lost 20lbs! And my HBA1C blood test came back yesterday - it's not worse! In July it was 63, and as of yesterday, it was 62. Admittedly, it's not much progress, but considering I was expecting it to be a disaster, I feel pretty good.

Anyway - I'm sorry for this rant, I guess. I just needed to get it out. Thank you for getting this far, though. Have a great day!

#chronicillnesswarrior #chronichealth #ChronicPain #POTS #POTSUK #EhlersDanlosSyndrome #EDS #NAFLD #InterstitialCystitis #BladderPain #BPD #BorderlinePersonalityDisorder #Familydrama #Depression #PTSD #Migraines #Diabetes #diabetic #WeightLoss