#Interstitialcystitis

[thatdoesntsuck]

Today was the first day in over two weeks that my #InterstitialCystitis didn't have me either running to the potty sixty times during the day and night or rocking back and forth like I just escaped from an asylum. It's kinda nice. 😉 So I did some low key tidying projects, such as taking everything out of my desk drawer to be sorted and (some) put back, and then folding all my plastic bags into nice tidy triangles instead of just stuffing them into another bag that takes up a lot more space. The little folded bags are also great to put in your glove compartment, trunk, and purse. I also made a new recipe - a Taco Pasta Salad. I saw the recipe on FB and modified it to fit my dietary needs. Major #WhatAboutBobbing happening with this meal. Gonna make this again. The last pic is my new (but used) book. A FB friend suggested that I would enjoy this quite a while back and I legit had it in my Amazon cart for over year. Just lurking. The hard back of this book cost over $200 soooo, that didn't happen! I found it used and it feels like I found buried treasure. #RollingWithTheGnomies #TidyingUpWithHeidi #VeganFoodShare #GlutenFree #EDSAwareness #MastCellActivationDisorder https://www.instagram.com/p/CpBnIz8uB8Y/?igshid=NGJjMDIxMWI=

[vizthedatum]

Crosspost from Meta platforms: Bladder instillation outfit/selfie of the day (photo not pictured on this tumblr post)! And I also got flowers for myself afterward.

I’ve been flaring since yesterday and this morning was horrible (wrote this in the morning before my appointment today: https://www.tumblr.com/.../i-am-definitely-flaring...)

IC (interstitial cystitis) flares are so fucking dumb. But for me, they are indicative of how much stress my body is holding.

I feel better after the bladder instillation but still pretty fatigued.

—

I had a great weekend, and I don’t think I did anything too stressful except for push myself too hard with hanging out with my friends. I don’t regret any of those friend hangouts. I *do* regret ruminating about work and my future (outcomes that I don’t have control over). I do regret not resting more, with my limited time off.

The rumination combined with pushing myself physically to be socially and physically active probably exacerbated my already high stress levels from work last week.

--

For much of my life, I have put myself last as an uninformed means of survival and people-pleasing (or environment-pleasing?). In my mind, it was always a hustle; the following questions are a subset of what would run through my mind: when is the next class or meeting? what is the next goal I need to accomplish? how do I get people to like me and to love me? who do I have to talk to? what crisis is waiting around the corner? is my brother okay? why is my partner so embarrassed by me? I wonder if people will take me seriously this time.

Even when people gave love/care/energy/time to me (and I was very grateful that they did), I don't think I was receiving it in a healthy or balanced way: I'd either be desperately hungry for it (because I was starving, metaphorically), I'd chase it (because I was scared I wouldn't have it), or I wouldn't understand the boundaries involved.

I don't know if I trusted the right people to give me love AND to clearly articulate what the conditions were of that love. It is now a need of mine to know what the boundaries are - I'm autistic, and I have communication issues with people who aren't neurodivergent AND with people who are on different areas of the spectrum.

I am an external processor, and I need repeated communication that evolves with time as the situation changes. I will no longer be guessing when people need to enforce boundaries and don't tell me.

And I will no longer feel ashamed for people thinking I'm naive for being so vulnerable. I have a lot of lack of discernment (something I'm working on) and chaotic trust issues.

And I really REALLY don't care if people think I'm resting too much - I am aware that I need more rest than most, and I am so tired of being ashamed about it. Go ahead and think I'm lazy.

I need to prioritize myself more, is what I'm saying. As much as I want someone to love me (and many people do!), I need to pour into myself more. I need to ask for help more. I need to be able to say no AND to take a no. I need to understand when I feel disrespected by others and by myself... and act in my best interest.

Because I don't want to keep being traumatized. I don't want to push myself so much that I flare with chronic pain - sometimes my flares are random, but a lot of the time, it's because of stress, burnout, and masking. Diet and exercise DO ABSOLUTELY NOTHING when you're stressed out as much as I am.

[pageportals]

I'm so tired of everything I do being affected by all the ways my body doesn't function, from the moment I wake up until I go to bed. What I eat and drink. What I wear, from shoes to pants to underwear. What I can use on my skin. How I sit. How I lie down. How I get from one place to another. What activities I can do in my free time. What job I can have. How I can be intimate with my boyfriend.

I just want to be able to choose what I want instead of what my body can handle.

[ratsandrocknroll]

What my life looks like when I'm in a pain flare. I haven't added details to the pile on "the chair" yet because clothes are hard but I'm still making myself draw each day to stay in the habit #chronicillness #chronicpain #invisibleillness #interstitialcystitis #art #artist #sketchbook #fernlavenderart #artstagram #artistsoninstagram #illustrator #illustration #fineliner #sketch #sliceoflife #dailydrawing #todayidraw #dunedin #bellezobrienart #agoraphobia #wellness (at Dunedin, New Zealand) https://www.instagram.com/p/COW5Cl_p6p_/?igshid=1xf3uva44tgcq

[miraclechild95]

It ain't endo bloat today thats my God damn bladder bloated from my diet change due to me eating food good for cholesterol but bad for my bladder. Yes it hurts, yes I have all the symptoms of a UTI without actually having one. Please kill me lol #bloatedbelly #bloating #bladder #interstitialcystitis https://www.instagram.com/p/CF2VXe4BP5B42T4GULLeOTkPFXA_ImzFUj92JA0/?igshid=srvm543qd3z9

[lifeoftinablog]

WHAT I LEARNED AFTER BEING DIAGNOSED WITH IC

Strap in, grab some tea, maybe a coffee, this is going to be a long post.

Incase you don’t know what IC is, IC stands for Interstitial Cystitis. About a year ago now, in April 2019, before I quit my daycare job, I started experiencing uncomfortable symptoms in my bladder. I couldn’t hold my bladder, and had to run to the restroom every 5-10 minutes at most. It was an absolute nightmare, and a struggle. I was worried at the time, working a solo position job, that I would lose it. I had no coverage other than managers to come and relieve me for the restroom, and when managers weren’t available and I had no customers, I would quickly run to the restroom. I felt like I had no control, and like my life was primarily being spent in the bathroom when I should be working. I had a hard time suddenly occupying myself with activities with the kids, or watching movies. There was just this constant tugging feeling in my urethra, begging me to use the restroom to catch some relief. A little TMI, I know, but that is my day to day, constant feeling in my body. The tugging feeling never stops in my bladder. I feel like every single moment, I’m going to suddenly use the restroom. At the time I thought I couldn’t live my life like this. I thought a huge contribution to the feeling might in fact be the amount of stress that my job caused me.

In mid May 2019, my job received word that we would officially be closing down for good. Corporate had decided we weren’t worth keeping open. A lot of children and their families were heartbroken, and in a sense I was too. That job had been 7, almost 8 years of my life. The stress of it had finally started baring down on me, and especially my bladder. But it seemed like a sign in the end. I reached out to my long distance boyfriend, and we had decided it would be best for me to take a step forward in life and move to Florida. So I quit my job before it officially closed down, and prepared for my move. In the time frame of moving, and settling down in my new place in Florida, I suddenly felt better. My bladder symptoms seemed like they had completely gone away. In that same time frame, I had made the decision to change my lifestyle. I started clean eating, where I completely eliminated sugar, and stuck to plain and simple dishes with spices. No dairy, very little bread/carbs, and a cheat meal of my choice maybe once every week or two depending on my self control. I ate lots of meats, and complex carbs like rice or sweet potatoes. I had lost 37lbs by the time I completed my move entirely.

I was feeling real good about myself by that point. I finally went from a 1x size in women’s clothing, down to a medium depending on the type of clothes, although it typically stayed around a large in most clothing items. My body felt so healthy. And not to mention, I’d reduced a lot of stress in my life. I moved away from stress in Washington - a stressful job, and some times stressful home life. I’d gained freedom and took a giant leap forward in my life by moving to Florida. It all seemed like I was getting a grasp on myself. I started a new job in Florida, and it felt a new beginning. No one knew me, so it was a chance to potentially make friends and make a secondary home for myself. I learned new skills, and worked harder than i’ve ever worked in my entire life so far. That goes for both physically and mentally. The holidays put a true test to my patience and my newfound skills. When the holidays passed, I was heavily praised by customers and coworkers for all my hard work, and even offered promotions of various kinds. I climbed my way up in my new job. I felt so appreciated, and on top of the world.

And then suddenly that tugging feeling came back. I distinctly remember standing at the register at my job, waiting to take a customers order, and I just couldn’t hold my bladder back. I felt like any second I was going to burst in my pants and embarrassingly wet myself. I couldn’t let that happen. I quickly flagged down a coworker to take over my position, and I ran to the restroom. I suddenly felt a burning sensation after relieving myself, and I started to cry from the embarrassment and pain of it all. My manager was so kind when I had returned from the restroom, and she had made an emergency run to a nearby pharmacy to get me UTI medication and a test kit. I was sent home early that day to test myself and rest. My test came back positive for a UTI, and I was immediately sent to Urgent Care. I hadn’t been to a doctor in years by that point and was very nervous about cost. Luckily, I had insurance coverage, and my family’s help. I seen the doctor, and was prescribed medication for a UTI - antibiotics, and over the counter AZO (a bladder medication that helps relieve pain, burning and urgency). The doctor was certain my symptoms all meant a UTI, and my tests all came back positive for it. They insisted that the antibiotics would be what would cure me.

Weeks later, after finishing my antibiotics and seeing the doctor for a checkup, I was given another round of antibiotics as the UTI supposedly had not fully gone away yet. But the urgency, and frequency I’d been experiencing for months at that point was all still there and continuing to feel fresh. I took the second round of antibiotics, and my stomach became extremely upset. I was sick at work constantly, with severe stomach pain. I decided to come off of the antibiotics a little early, and saw the doctor again. They ran urine tests and cultures, and my UTI was gone, but my symptoms remained. The doctor was baffled - and referred me to a urologist. My job became insistent and urgent that I seek care, and so I did. For the following months, I suffered with constant bathroom useage that hindered every aspect of my life. My time at work was always interrupted by the call for the toilet, and even outside of work I was spending more time in the bathroom than doing hobbies. Trying to walk at the park meant searching for the nearest bathroom every couple of feet. Going on trips, especially long car rides, meant pulling over every 10 miles or so, if I could make it that far, and using a gas station bathroom or a rest stop. My life was getting sucked away from me.

I finally saw the urologist after many appointments beforehand, and after a few weeks of waiting. It was determined that I had IC, interstitial cystitis, a lifelong bladder disease that would never be cured. The urologist refused to treat me until I completed some tests and procedures that would require some hospital time. It wasn’t long after that the coronavirus pandemic started, so I had to hold off my hospital visit and testing required by the urologist. In the time during the lockdown from the pandemic, I’ve learned a lot of things about my body.

I wish I had known much sooner how important it is to take care of the human body, and to listen to it. My body had been telling me for such a long time that things had been irritating it, and yet I’d continued forward with a lot of what my body was hurting from. A major cause for my IC is stress, which is something I found therapy was helping me to work with. For anyone dealing with major stress in their life, I highly recommend finding yourself someone to talk to. Therapy doesn’t fix everything though unfortunately. I found that my body, especially my bladder, was extremely sensitive to a lot of foods. Gluten, dairy, and soy are major triggers. I found by cutting out anything involving dough or bread made with wheat, milk and cheese, and soy sauce or oils containing soy, I’ve felt like I’ve gained a little more control over my bladder (although still not perfect). I also started pushing myself to incorporate more greens into my diet. I started taking supplements that would help try to heal my bladder and body. I take D-mannose to heal the bladder, Pumpkin Seed oil to help the bladder, Vitamin D3 because I’m deficient and low energy, PB8 Probiotics for gut health, Ashwaghanda Root for anxiety and stress relief, Magenisum for muscle relaxation and tension, Claritin for any potential allergens irritating my body or bladder, Peppermint capsules for bloating relief, and a multi-vitamin for women to have healthy skin, hair, and of course my overall body.

The combination of everything has started to provide some relief, but I know that I’m not yet at perfection. I can only hope I’m on the road to healing my body. Cutting out all the sugar and junk foods is something I truely wish I had done sooner. Not only did all of it cause me to gain weight most of my life, but it sure took a toll on my health. Taking care of your body is so important. As you get older, you’ll face struggles like myself if you don’t start sooner on caring for yourself and your general health.

[wasatchhypnotherapy]

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A post shared by @audrey_holocher_hypnotherapy

Got Pelvic Pain? Learn your pain management options from a Gynecologic Surgeon & Certified Medical Support Hypnotherapist. 💜Instagram Live 6.9.20 4pm ET, join here: @audrey_wasatch_hypnotherapy #pelvicpain #interstitialcystitis #endometriosis #overactivebladder #pelvicfloor #gynecology #mindfulness #hypnosis #urinaryincontinence (at Heber City, Utah) https://www.instagram.com/p/CBOUglZjwCI/?igshid=1fco554qvmofb

[thedeafzebra]

Happy New Year! I realized last night, I totally dropped the ball on my #chronicallyill365 project for 2018, but honestly, I don't even care. My health got too much in the way to keep up with it the way I wanted to. I'm currently down with a cold and working on Posh stuff. But I do plan on posting more personal posts soon. #ehlersdanlossyndrome #fibromyalgia #chronicfatiguesyndrome #myalgicencephalomyelitis #gastroparesis #interstitialcystitis #newyear #happynewyear #chronicallyill #chronicillness #chronicpain https://www.instagram.com/p/BsHEMsHHzQg/?utm_source=ig_tumblr_share&igshid=p9q7o6vz3c1m

[kewpiecreations]

Me trying to ignore the absolute hell fire that is my pelvic pain.

[thatdoesntsuck]

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A post shared by Heidi Hollister (@holliheibi)

I had to come home earlier than expected because my body is a jerk PLUS I'm a doofus & instead of putting a kidney/bladder pill under my tongue, I opsydaisily put a pain pill. To beat the pill kicking in & ruining my ability to drive I left a few minutes after I realized "hey, this isn't dissolving & it tastes different!" When I walked in my front door I said my usual greeting "Hey Guys!" Then I sank. But not Peanut. He was so glad I was home. He wanted to snuggle, be pet & held. He's been my lovebug since. Short story long, if you listen closely you can hear him purring. #Peanut #Bunnies #Purring #YesBunniesPurr #Pickle #BunnyLove #BunniesOfIG #BunnyDomination #PainPill #EDS #InterstitialCystitis #BunnyHugger https://www.instagram.com/p/Boxcxoxlof0/?utm_source=ig_tumblr_share&igshid=ikfv2yvz009i

[vizthedatum]

Just had my bladder instillation (I get them every two weeks roughly).

My face is puffy because I had a panic attack last night and I cried all night.

Why hide any part of me? I am chronically online because it’s a tool for connection and also because I’m on my computer and phone all the time because I’m a biostatistician and Data Scientist. I’m also a huge tech nerd who loves learning new things.

I am also disabled. And while I post funny memes about it all (because humor is a valid coping strategy), my #disability IS #disabling.

When I tell you or my colleagues the reason why I couldn’t do XYZ or why I did it in a certain way - it’s not an excuse. I am doing it for a reason. And most of the time, it’s out of my control.

I have been telling myself that I’m a fraud and an incompetent, lazy person for SO LONG. My #impostersyndrome is so bad.

I love what I do. I love helping people in healthcare with the skills I trained for. I wouldn’t have gotten my PhD if I weren’t committed to learning what I needed to do my work.

But now, I’m terrified of my meeting with my boss later this afternoon because I don’t think I can stop myself from crying. I don’t want to justify that I am trying my best AND I am capable AND that I need more accommodations (such as help with admin and work flow stuff - but also it’s hard to ask what I need because I DONT KNOW. I NEVER GOT SUPPORT AS A CHILD. I HAD TO DO SELF-HARM TO PUSH THROUGH BURNING MYSELF OUT AND THEN BEING CHRONICALLY ABUSED CONSISTENTLY).

It’s so hard getting diagnosed with #autism as an adult. I’m on two waitlists and it will be a long process.

I am still fighting with my provider and COLLEAGUE about why #interstitialcystitis should be considered a disability.

I don’t have many other people to financially count on. My brother is on disability. My parents lack empathy and awareness of my abuse. My ex-spouse devastated me. I do have some help. I do have privilege and an okay credit score. But being disabled with valid goals of living a comfortable life, WHICH I DESERVE, is hard as fuck.

Which is to say, I’m grateful for my community. I’m so happy but also distressed AND ALSO DRIVEN. It’s all true.

[pageportals]

My vulvodynia treatment has been on pause for almost a year now because the clinic decided to "reorganize" their care after first being closed down for months because of corona. So, after waiting for 11 months initially to even become a patient there, I am once again put on a waiting list to continue my care. I would like to see them tell a cis man he could not have sex for three years due to budget cuts.

[ratsandrocknroll]

Me rn waiting for the meds to kick in so my pain can ease enough to get some sleep. Its 3am. #spoons #spoonie #chronicillness #chronicpain #invisibleillness #wellness #interstitialcystitis #facialpain #voidjuice #fuckthis #pain https://www.instagram.com/p/CKyxx1rJMP6/?igshid=163sc6yystqkh

[drbetsygreenleaf]

Yes....you reached the real Dr. Betsy Greenleaf My mission is to spread education about pelvic health. Did you know 80% of women will experience a pelvic health condition at some point in their lives. Many women suffer in silence either too embarrassed to seek help or they accept it as a normal part of life. These conditions don't just affect women but affects all those around them. ☹Placing a strain on personal relationships ☹Affecting work performance ☹Avoidance of social activities ☹Affecting mother-child interaction No one needs to suffer. There is help. 👍Like 👉Follow 👏Share Hopefully social media won't delete me again....so I can continue my mission to help 1 million women achieve pelvic peace. #drbetsy #drbetsygreenleaf #pelvichealth #pelvicpeace #pelvicfloor #pelvicpain #incontinence #incontinenceawareness #uti #bladder #bladderinfection #interstitialcystitis #vulvodynia #vaginalhealth #vaginitis #womenshealth #womenempowerment @dr_tabatha @drdebmatthew @nourishingholly @shape @womenshealthmag @thetalkcbs @theviewabc @selfmagazine @shawntassonemd @natkringoudis @theresadepasquale @patrickmichael25 https://www.instagram.com/p/CQ9AlhJj7Ps/?utm_medium=tumblr

[alitillblar]

Update

I used to use this blog to talk about my IC. How times have changed. 

The last post I wrote about it was just before my cystoscopy. It was a strange experience. In case you’re struggling with IC, or are waiting for said procedure, here’s what happened at mine.

Before surgery, I talked to the urologist (I assume, as he was the one doing the surgery) who proceeded to inform me that if the surgery improves my symptoms, that is there way of diagnosing me with IC. They also showed me how much they would be expanding my urethra (tmi I’m sorry), and that they would be filling my bladder with some liquid (I can’t remember what) and stretching it to its fullest twice. Now, I’m not going to lie and say I didn’t get a little nervous, or that it didn’t hurt afterwards. Because it did. A lot. I also woke up in a puddle. It was not a fun day. I did end up having to come back to A&E because a few hours after I left the hospital, my pain was so bad they ended up inserting numbing gel into my urethra so that I could pee, because I just couldn’t. 

But that pain was worth it. The one day where it appeared to be the worst urinary related pain I have ever felt (they stretched it too much basically), ended up being worth it for the next 3 years, and on goingly so (touch wood). 

I have since been fine. I have the odd day where I have a little pain, but honestly, I am so much better. I was also on amitriptyline for a couple years to lessen the pain and calm the nervous system between my brain/bladder/bowels. And it worked (touch wood). 

So now, in order to help maintain this, I drink plenty water, always. I don’t drink caffeinated drinks unless it’s tea. I’m careful with what I eat so as not to trigger my IBS, which tends to trigger my IC symptoms - but mildly so in comparison to a few years ago.

It does get better, I swear. It took me 22 different doctors (thankfully the last was the best and he stuck with me through it all), countless appointments with GPs, gynaecologists, and finally a urologist - all over a year and a half. But it does get better.

SO NOW - I’m getting old. I have faced other challenges, and I am going to use this blog as an escapism from adulting with gluten free (GF), dairy free (DF) and the occasionally vegan recipe I come up with when I’m cooking. NB: I’m not vegan but sometimes I do make vegan meals without thinking about it. I have the world’s crappest memory, so if I want to make them again, they’ve got to be written down somewhere!

[imagineloveeverywhere]

The #struggle is too real right now!! I have #pneumonia on top of #anxiety and #depression - it’s a #fullmoon & I’ve started my period while having #endometriosis & #interstitialcystitis (which is not fun) 😫😷😫 #helpmebabyjesus #imdone #cantbreathe #cantstopcoughing #takemetothemorgue #crampsarekillingme #iwillvomiteverywheresoon #exorciststatus #hormonessuck #thissucks #fml 🤯🤯🤯 (at Chino Hills, California)