IC PAIN- So Humbling

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Today I woke up to zero bladder pain. It was amazing and I had high hopes that the day would continue on that path, but then I had another health issue- swelling in my right foot and ankle due to wearing an ace bandage too tight on my knee. The doctors were concerned that I had a blood clot so I had to go do an ultrasound. As I sat in the ultrasound office, I began to ask myself, "when and where will the pain and health issues end?". Two weeks previous, my bladder was well enough for me to go skiing (a sport I adore) and because I am so out of shape from IC, my right knee gave out and I tore the cartilage. Sometimes, it seems like it never stops because it has been one health thing after another with me; BUT the ONLY thing that brings me to my knees is IC.

This afternoon, "the football bladder" kicked in. It is that heavy pressure feeling like a major uti. In fact I thought that maybe I had a uti because nothing else feels quite the same but the uti strip was negative. So, I think it was caused from all the stress of worrying whether I had a blood clot or not. It is that heavy feeling of REALLY needing to pee even when you don't.

I can't tell you how exhausted of this disease I am. It has totally taken over my life and now that I have really good days, the bad ones are even more torturous. 

My husband said to me that tomorrow will be better. On evenings like this, that those are the words of hope I have to live on. 

IC is humbling because the pain can come from no where and become so great. I don't know anything else with that power. 

Bless you all for the strength you have to deal with this disease. May we all conquer it in the end. 

love love love

Samara

 

pterzwife's picture
pterzwife

Hi sama ra:
 
I am definitely on my knees today. In awe about all the suffering I seem to be doing, Found this post by Dr. B. It is helping me to erad and reread it:
 
No matter what you are celebrating this time of year, it is a good time to reflect on the celebration of life. And, that traditionally comes most commonly in the form of food.

When you are fighting a condition such as IC, that can be challenging until you are much further along into treatment. For some people, they may be a year and a half into treatment and still on list #1 or #2, while others who are just a few months into treatment are already deep into list #3.

What ever your situation may be, it is important to try and make the most of what you have and celebrate your successes and not your failures. Because, everything in life is about perspective. Today I was speaking to someone who is doing fantastic and bashfully she said she is frustrated with her diet. She is sailing through at a very fast pace.

Someone else may be happy to have made it to lis #2 after being on list 1 for months or even over a year. We all have our own gauge when it comes to our situation and, understandably, as we are all humans and individuals.

Life is an evolution of ourselves and our perspectives. Some of us have great change needed physiologically and some emotionally, and some both. Suffering is sometimes something we have to do as a part of that process whether that is that we have been given an illness or have had to deal with something much less debilitating. For the person who has been given something else, they may think that their situation is worse and vice versa.

Keeping perspective and remembering to be grateful for where ever it is you are in your own evolution is so important to maintain your sanity and to allow yourself the room to go through the steps you need to in order to go through your process.

This year has been filled with a lot of emotion and suffering for a lot of people. And, as we bring the year to a close, I hope that each of us allows our hearts to be filled with the light that emanates from the goodness and happiness within us and not the darkness.

This year has also been filled with many successes and happiness. Many people becoming much healthier, several healthy child births, some engagements, and marriages. These life events are common place to most, but were once only dreams to those that were able to make these things happen in their lives.

Through the countless tears, the endless struggles, and the feelings of defeat comes the other side where one may find happiness in life again. So, this holiday, celebrate life-as it is-filled with difficulty and the attainment of one's goals. Celebrate the friendships that come from these things-the hands that were extended, the laughs that brought a smile where there once was a frown.

Have hope, strength, and keep your perspective.

cprince's picture
cprince

Thanks for reporting this! I remember reading this shortly after starting treatment scouring the blog as I think we all have looking for hope! 

Samara's picture
Samara

OK, THAT IS WONDERFUL! THX THX THX! Helps to keep the thinking in line for sure! <3

Samara's picture
Samara

Sorry you are feeling badly though Bonnie. Hope it gets better soon. 
 
hugs!
 
 

deir's picture
deir

Samara-
I have had various pains through life- broken foot bones that wrecked my career for a few years, back spasms that precluded me from dancing and exercising for a while but I agree- IC is in a class of it own. I hear what you are sayign about the bad days seeming worse after a good day. All I can say is that my ability to cope with these ups and downs is worlds better than it was when I first started treatment. I can almost always get myself up before i really spiral downward. It has been a huge spiritual emotional journey to get to a pretty good point of acceptance for what each day brings. I haven't accepted the big picture- why would I? I have hope that Dr B will help me regain my former health- but I accept each little moment as it comes the best I can.
The nights have traditionally been the worst for me- emotionally and physically but now I know (or the most part) when I get one of those scary nights that it won't last forever. I try to just accept the feelings I have and move on from there.
 
THIS TOO SHALL PASS

Samara's picture
Samara

Thanks Deir,
You are right. I am so thankful to have the support of others going through this because family members and friends just don't understand. In fact, I have lost so many friends because they just get frustrated in the fact that I can't do so many of the things I used to do (restaurants, horseback riding, hiking etc etc)This is a very special disease and I would like to say it is reserved for SPECIAL PEOPLE ONLY, because the women I have met that suffer from IC are EXTRAORDINARY.
 
Thx for your support!
xo