Monday, April 17, 2017

The Journey is Different For Everyone

It's been a long and painful road to walk these 2 1/2 months. I remember the day it all began and exactly where I was and what I was doing when I felt what would completely change my life. Sitting on the couch, reading a book with my husband by my side and getting a phone call from my dad that he was extremely stressed out and needed me to come to his house. It felt like any other bladder infection or UTI I can remember having and contacted my doctor who asked about my symptoms and gave me the standard antibiotics. Only this wasn't to be a bladder or UTI infection as those of you who have followed my blog posts know. This was going to change my life, my lifestyle and my way of life for the rest of my life.

Interstitial Cystitis or IC is not only a name you can't pronounce it can feel worse than being diagnosed with cancer. It is incurable and there is no one treatment that works for everyone. Basically you will be conducting a science experiment on yourself to find the one thing or combination of things that will get you as symptom free as you can. There will be more tears and frustration than you can imagine, but you are NOT alone. I had the wonderful pleasure of having so many wonderful people reach out to me and tell me about their own journeys, one such person is Elizabeth Musser, an author I reviewed her books for back in 2011 and 2012. Only God knew the connection we would have outside of that many years later. She gave me back hope in that this is NOT the end of my life, but simply a new chapter and that what works for some, doesn't work for everyone.

That there is nothing wrong with challenging your doctor if you feel their level of compassion and understanding to what you're dealing with is sub par. That you can seek help from the internet through your own research, trial and error on yourself and at times, being your own doctor and advocate, because unless you have had this, you don't know what it's like waking up with a horrible Bladder Infection or UTI every day, 24 hours a day with no way it seems to stop it. Doctor's don't want to prescribe pain meds but honestly until you can get to that comfort level, you will take and do almost anything in an effort to re-leave that pain.

So where am I today? I have had some great days between Saturday evening and Sunday. I can't say I am symptom free but between taking 50 mg of Elavil which deals with overactive nerves, to adding Aloe Vera capsules 3 times a day along with giving up coffee in lieu of Marshmallow Root tea, and minimizing my diet of foods that cause pain and those that don't. I am feeling what I could call almost normal. I can feel the sensitivity of the IC, but it is being held back for now. I am off the pryidium which turns your urine orange, and off the pain meds so I can function in ways I wasn't able to before.

I am working with trying to figure out if a high alkaline diet or a low oxalate diet is the best for me, so trying all kinds of food is key to keeping me pain free. The one thing that really stood out for me in talking with Elizabeth is we can go back to our lives prior to that beginning of IC and see where we could have made some changes in our lifestyle that could have prevented this from happening. For me it was dealing with all kinds of stress being generated from my dad, my husband's job, my daughters heart issue and just trying to manage through all of it when everyone wants a piece of you and you try to hard to accommodate everyone and end up short changing yourself. I remember gaining a lot of weight recently and that enabled me to not watch what I was eating and thought I could eat everything and anything I wanted while trying to manage my stress. Now I can see that connection and the light at the end of the tunnel thankfully is no longer a train, but a way out of this darkness of pain and agony.

So today is the beginning of my journey into the light hopefully for quite a while. Thank you to all that have been praying for me, calling me and emailing me. You are God's angels in the flesh, someone I can talk to and cry with. For that, I am forever thankful.


Terra said...

I am glad your journey is heading toward the light and health today and I pray you will find the right combinations of treatments and foods for healing.

Debby@Just Breathe said...

I like where you are today. Praying this continues for you.