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IC treatment just new time for awareness month ;)

Sep 16, 2015 1:33 PM

Since September is Interstitial cystitis awareness month I hope everyone is wearing a little bit of teal in support and learning a little bit more about IC. For example: did you know that drinking cranberry juice as well as other fruit juices like orange, pineapple, and even grape can cause your bladder to flare and/or spasm if you have IC?
Other beverages to avoid are coffee, caffenated teas, alcohol, and anything carbonated.
My current flare began late July/early August, with some slight symptoms creeping on earlier in the summer. It ended a two year remission bought by my last round of instillations done by most excellent urologist who uses her own special cocktail of medications for the bladder instillation.
I met with my urologist Monday, just narrowly avoiding needing a cystoscopy, and instead we talked in her office about my upcoming treatment plan. Since my fibro, migraines, and endo are/were all flaring as well I have been forced to make a lot of decisions about my illnesses in a very shot time. I have been placed back into menopause with a Lupron shot a week and a half ago to tame my endometriosis and the ovarian cyst found during ultrasound in the ER. My occipital nerves were blocked. Now I face 6 months of intensive instillations to treat my IC. Next steps are xrays of my ribs and shoulder where I was injured a year and a half ago, restarting acupuncture, and deciding the next steps when the xrays come back.
All of this while job hunting, with little to no income, and starting to get the feeling I'm being black balled from my profession. Been applying to charities for assistance and getting turned down. I'm extremely hurt from all the rejection. Rejection from jobs, rejection from charities that have mission statements claiming they are there to help people just like me except obviously not me because they all say no, rejection from Friends tired of my being sick. I have no idea how I will afford rent, food, meds, and treatments. Still trying to stay positive but I have thought about killing myself in detail. I feel like a burden. And nobody would notice anyway.

Sep 16, 2015 1:53 PM

I am so sorry you are struggling so much. If there is anything I have learned on this app, it is you are not alone. Pain sucks, it's tiring, depressing, stressful and causes all sorts of trouble. I don't have answers for you, and indeed have thought of ending it from time to time but carry on, please. It will get better... often it's these points that we push forward enough to get through and are glad. No one knows more than you the pain, but think of the joys tomorrow may bring. Hugs.

Sep 16, 2015 2:50 PM

Wynnbliss36, I couldn't help but tear up reading about your struggles. It seems a reflection of where I was 7-8 months ago or more. I was so overwhelmed with all the different medical problems and started thinking it would be easier to die. My rheumatologist asked some questions regarding my mental health and when I voiced the same to her she researched my meds and weaned me off cymbalta. My antidepressant change has helped, though I still at times I still feel overwhelmed.

I know it's hard to see how you'll handle anything else, but we are all here to give you emotional support. I know it's not the same as personal, touchable friends. But we would miss you all the same. Just take everything one day at a time, one step at a time.

You seem to have a good team of doctors. I've learned to deal with the most intense, pressing issues first, medically. Talk to your doctors about your feelings. Have you considered taking a position outside your previous field? It may become a blessing in disguise.

The struggles for each of us are tiring & frustrating. And each of us handles it the best we can. But there is a point when the road we travel begins to level out. Whether temporary or permanent, it applies us to recuperate and recompose ourselves. (((Hugs))) for you to know you are not alone. You are in my prayers. 🙏🌼

Sep 16, 2015 9:00 PM

Wynn, sorry you're going through so much. I don't know why but all juices, milk, and got drinks give me a lot of mucus. Thanks for letting me know about IC. The acronym want very familiar. I hope the treatments help, if only to relieve a little stress from everything else.
I remember first reading some of your posts, and thinking "Damn, her story sounds a lot like mine." I've felt suicidal many times, especially after certain diagnoses, and ER trips. Life is hard, especially when everyone seems to be rejecting you.
I never know how my family affords to take care of me, and everyone else. My aunt and great uncle both live with my grandparents, one retired, the other care taking and volunteering. My aunt has had multiple emergency surgeries.
I know the many supplements and meds get expensive. One container (I believe it's about 6 oz) of DMSO cream is $20, although it's cheaper online or if you buy the normal roll-on/spray container. That's stressful, thinking about money. My dad has very little income, being an instrument fixer and all.
I know I'll wear orange in November for CRPS awareness. I found it comforting to know you are alive, it makes me think I really might survive after all. My sister hasn't been able to get a job due to her age, when my dad had a job with the newspaper at the same age. Then again, he was home schooled through graduation. I am also not old enough to get a job, though I would if I could.
I care a lot about you, and tough that might not mean much from far away, just know you're in my thoughts.

Sep 16, 2015 9:42 PM

Ferretbandit, IC is interstitial cystitis. I think I understood you to say you weren't sure what it was? 🙏🌼

Sep 16, 2015 11:09 PM

Thank you ALL for your support, and it does help, even from far away. Just found out my health insurance might be changed or cancelled which would mean having to switch doctors/everything. The thought is so devastating I can't process it right now because yes, like you said Flappys I have an excellent team of dr.s and specialists.
Also my boyfriend of 3 years is starting to act how my ex husband did at the end with behavior that shows resentment towards my continued illness and if I try to get him to talk he yells at me. He has also started yelling at me for my fibro fog and when I ask questions to clarify because I'm confused. It's only a little bit of the time and 90% he's still very caring and helpful, but it's like a darkness creeping in.
Just so overwhelmed. Was turned down for another job today. And yes, Flappys, I am looking both inside and out of my profession.

Sep 17, 2015 8:36 AM

Bless your heart Wynnbliss, you are under tremendous stress. I'm praying for you. I know what you mean about the boyfriend's feelings. As good as my hubby is, sometimes he gets real frustrated, especially with my fog moments.

But he's also under stress from having control of his mom. She had a stroke that took her remaining sight (glaucoma) last November. Her physical & mental status is rapidly deteriorating. Her doctor has ordered physical therapy through a hospice care, which will go to the assisted living facility. He is so stressed about her, and he's very worried the Mayo docs are going to take my license because of my tremors and fog/dementia. He's voiced concern that the Mayo doc may be right and the tremors, dizziness, imbalance, and lots of bowel/bladder control is going to be major bad. As much as I'm by myself throughout the day, when he asked if I'm ok with him going metal detecting or digging (antique bottles of old house sites), I tell him to go. I'd rather be alone a few hours than him drop from a stroke or heart attack. I've had to show him websites where he could read up on my meds issues, and its helped him a lot.

Maybe your boyfriend would read things you show him, of go to an appointment to hear from the doc, like my hubby did. Does he have a hobby of a way to destress? If not suggest something to him. Sending you (((hugs))) and praying things will improve for you soon. 🙏🌼

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