Friday, October 30, 2015
Urodynamics and IC pain
If you are an IC sufferer and you have a Urodynamics test be prepared for a lot of pain. The test itself was not so bad except I couldn't relax enough to pee even though I really needed to do so. After the test is the pain. My bladder felt like someone poured boiling liquid in it and then punched it repeatedly. I couldn't get any relief last night. Plus two days of 4+ hours in the car for this test also made me hurt worse. I dont really see much point in this test. They know I have Hunners ulcers already. It just one more procedure verses a prophylactic medication route. I know there is no cure and treatments are flimsy. There is no reason at all that I should be denied palliative care to include pain meds. No reason anyone should have to suffer this excruciating pain. Sorry medical professionals Motrin just doesn't cut it.
Thursday, October 29, 2015
Social isolation
Some chronic illnesses preclude one from being able to function much. Debilitating diseases like RA,MS,Lupus,fibromyalgia and CFS to name just a few. They attack the body. Inhibiting action. With a disease like IC or IBS we often have severe exhaustion physical weakness and the need to ALWAYS have a bathroom within a few yards, all of these diseases can be considered invisible illnesses at some point in their etiology. Patients are often ignored or dismissed spending critical time with wrong diagnosis or even no diagnosis. Getting an accurate diagnosis early on is difficult. What happens though, once you have the diagnosis and they dont know how to treat? There are limited options to offer or in some cases no options. When I was first diagnosed with IC there was literally nothing available except elmiron which at that time was simply unaffordable to someone without health insurance. So I tried things like willowbark tea and cornsilk. No soda. No cheese. No acidic foods. No fermented food or drinks. Come to find out all that cranberry juice I'd been told repeatedly to drink to cure the "reoccurring" UTI's was actually harming me. For a while I did okay. I was young too young to keep going to a doctor to say I'm not doing well. I pee too often and I'm always in pain.
I thought it was normal. I mean who didn't have to pee every single hour? Who could ride in a car for longer than 30 mins before needing the restroom? Certainly not I. I began avoiding events where I'd need to ask to use the bathroom where bathrooms weren't easily accessible. I adjusted my life to accommodate my needs. I joined the Navy thinking I could handle it I mean it was just like another job bathrooms would be available plus I'd have insurance to buy the constant antibiotics. I did okay. I had one pain flare lasting a few days that was masked as an UTI. I graduated bootcamp. I thought OK I will be normal. The months long antibiotics had at least cured the chronic lowgrade infection which reduced some of the symptoms. It was manageable. Then I got married. Sex was not always as enjoyable for me as I'd like but I didn't really correlate the sharp stabbing abdominal pain I'd experience after as being my IC flaring because of it. Then I got pregnant. Guess what's great about being pregnant? NO one thinks going pee 50 times a day is odd. I was finally "normal" despite my silent pain. I'd learned not to acknowledge how much pain I was always in. Grin and bear it. Fake it til its real. Suck it up buttercup. So I did, until during my 3rd pregnancy my right kidney stopped working. I had ignored a UTI believing it was just part of my normal IC symptoms. After that my bladder got worse and I had chronic kidney infections for years culminating in stones. Stones stones stones. If you think IC is bad ( which it is) try adding in literal handfuls of stones. You know what they prescribe you while sufferring stones? PAIN MEDS. Omg. My bladder didn't hurt. What a wonderful, if brief moment. So I was sent to my first urologist. Who looked at my chart and immediately prescribed ditropan. Which helped ease some of my constant urgency, mainly at night when I wasn't drinking anything. I thought finally maybe I'll feel better. I restricted my diet even further to include low oxylates. Which helped rid me of the constant jackstones but also means no more pain meds. I still get a few stones on occasion. My bladder however has only progressively gotten worse. I take ambient at night to try yo get an hours uninterrupted sleep. I was on ditropan 5 years but newest urologist took me off. I am still in chronic pain. A thousand papercuts with acid poured on with clenching hot poker clamps add in a few mule kicks to my kidneys and constant pressure in my chest wall. I do not go places often. Every trip is planned out to include bathrooms. Some businesses recognize me just because I use their bathroom. My husband does not even comprehend how bad I feel. He thinks if I go to bathroom that I then feel well enough to peruse through a store. No. I hurt. I just want to be at home in my bathroom.
I thought it was normal. I mean who didn't have to pee every single hour? Who could ride in a car for longer than 30 mins before needing the restroom? Certainly not I. I began avoiding events where I'd need to ask to use the bathroom where bathrooms weren't easily accessible. I adjusted my life to accommodate my needs. I joined the Navy thinking I could handle it I mean it was just like another job bathrooms would be available plus I'd have insurance to buy the constant antibiotics. I did okay. I had one pain flare lasting a few days that was masked as an UTI. I graduated bootcamp. I thought OK I will be normal. The months long antibiotics had at least cured the chronic lowgrade infection which reduced some of the symptoms. It was manageable. Then I got married. Sex was not always as enjoyable for me as I'd like but I didn't really correlate the sharp stabbing abdominal pain I'd experience after as being my IC flaring because of it. Then I got pregnant. Guess what's great about being pregnant? NO one thinks going pee 50 times a day is odd. I was finally "normal" despite my silent pain. I'd learned not to acknowledge how much pain I was always in. Grin and bear it. Fake it til its real. Suck it up buttercup. So I did, until during my 3rd pregnancy my right kidney stopped working. I had ignored a UTI believing it was just part of my normal IC symptoms. After that my bladder got worse and I had chronic kidney infections for years culminating in stones. Stones stones stones. If you think IC is bad ( which it is) try adding in literal handfuls of stones. You know what they prescribe you while sufferring stones? PAIN MEDS. Omg. My bladder didn't hurt. What a wonderful, if brief moment. So I was sent to my first urologist. Who looked at my chart and immediately prescribed ditropan. Which helped ease some of my constant urgency, mainly at night when I wasn't drinking anything. I thought finally maybe I'll feel better. I restricted my diet even further to include low oxylates. Which helped rid me of the constant jackstones but also means no more pain meds. I still get a few stones on occasion. My bladder however has only progressively gotten worse. I take ambient at night to try yo get an hours uninterrupted sleep. I was on ditropan 5 years but newest urologist took me off. I am still in chronic pain. A thousand papercuts with acid poured on with clenching hot poker clamps add in a few mule kicks to my kidneys and constant pressure in my chest wall. I do not go places often. Every trip is planned out to include bathrooms. Some businesses recognize me just because I use their bathroom. My husband does not even comprehend how bad I feel. He thinks if I go to bathroom that I then feel well enough to peruse through a store. No. I hurt. I just want to be at home in my bathroom.
Tuesday, October 27, 2015
The beginning to the end, or an end to the beginning.
After another endless night of pain, preceded by years of endless days and nights of pain, I find myself debating death.
EXCEPT I'm NOT depressed. I dont want to die. I just want pain relief.
I want a doctor who is more concerned with my pain level than they are with fear of the DEA.
I want to be treated as a person not as a chart. For my symptoms to be acknowledged and treated not to be ignored or tested for one more thing.
I am at the end of my patience.
Again, I'm not depressed, I am physically SUFFERING. I dont spend hours thinking negatively about my situation, I am way to busy finding bathrooms. I DO spend every moment of my life in pain.
I have Interstitial Cystitis. An invisible debilitating disease that I've had since I was 16. Marked not only by the 60 + daytime and 20+ night time urination trips but by agonizing pain. Pain when you do not urinate every 10 minutes pain during urination pain after urination. Inflamed uretal opening from wiping so frequently. Kidney pain from always having a full never empty bladder.
No this is not depression I'm battling. To imply that is to imply that I am not really sick. I spend every day pretending to be okay for other peoples sake because they can not fathom what I endure. So dont you dare try to say my feelings are depression. No it's not depression. It's the realization of futility in my pain levels being taken seriously by doctors and my acknowledgement that I physically can not handle this pain any more.
Every time I see a new restriction on access to pain medications I cringe, even though I am not on any. Those restrictions guarantee I'll never have adequate relief from an incurable disease.
I've read so many endless pages of people crying out for relief and being told they have to quit being negative.
You know what? That's total bullshit. It's not negativity it's a reality of our bodies limitation. We are only human and we hurt. If every moment you are aware, of a severe pain that never goes away that is called BEING IN PAIN.
EXCEPT I'm NOT depressed. I dont want to die. I just want pain relief.
I want a doctor who is more concerned with my pain level than they are with fear of the DEA.
I want to be treated as a person not as a chart. For my symptoms to be acknowledged and treated not to be ignored or tested for one more thing.
I am at the end of my patience.
Again, I'm not depressed, I am physically SUFFERING. I dont spend hours thinking negatively about my situation, I am way to busy finding bathrooms. I DO spend every moment of my life in pain.
I have Interstitial Cystitis. An invisible debilitating disease that I've had since I was 16. Marked not only by the 60 + daytime and 20+ night time urination trips but by agonizing pain. Pain when you do not urinate every 10 minutes pain during urination pain after urination. Inflamed uretal opening from wiping so frequently. Kidney pain from always having a full never empty bladder.
No this is not depression I'm battling. To imply that is to imply that I am not really sick. I spend every day pretending to be okay for other peoples sake because they can not fathom what I endure. So dont you dare try to say my feelings are depression. No it's not depression. It's the realization of futility in my pain levels being taken seriously by doctors and my acknowledgement that I physically can not handle this pain any more.
Every time I see a new restriction on access to pain medications I cringe, even though I am not on any. Those restrictions guarantee I'll never have adequate relief from an incurable disease.
I've read so many endless pages of people crying out for relief and being told they have to quit being negative.
You know what? That's total bullshit. It's not negativity it's a reality of our bodies limitation. We are only human and we hurt. If every moment you are aware, of a severe pain that never goes away that is called BEING IN PAIN.
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