I am healed....over 1 year now....after a 4 year journey. Thankful.

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if you are in pain...I am praying for you to figure out your answer.  I spent 3 years working on how to heal and my last pain was in June of last year...2012.  I was walking on the beach with family and could hardly walk.  I excused myself up into the long grass in the dunes and squated.....and was able to finish the walk.  That is the last pain I remember.  But I still think of you all and remember that time of life all the time.  It will always be a big part of who I am and I want to help all of you heal.  Keep the faith.  Work on the diet and anything that makes sense to you.  Read all you can on anti- inflammatory diets and do things to build up your immune system.  Nature, sun, love, family, yoga, friends, spiritual work, relaxation, decreasing toxins.  It all helps.   You are so lucky to have this web site.  Matia and this group of people helped me in my darkest hours when I thought I could not stand the pain...or make it through the evening.  What saved me when it was worst?  Lots of water, gentle tea, celery, cucumbers, hamburger with garlic, eggs, and occasional Vicodin.  I was scared to use prescription meds....being a pharmacist, I knew the side effects and only use them as a last resort.  

I have not posted much this year but you are all in my heart and I think of you every time I counsel a customer with an antibiotic for a UTI.  I always try to fill the prescription quickly and I can see the fear in their eyes.  I ask them if they are in pain and only about 1/2 say they are.  If they are in pain I recommend Azo or a generic version since that helps some people.  

Peace to everyone.  You are not alone.  Keep working together and share what works for you.  Hang in there!!!!!

natalie86's picture
natalie86

Reading this has brightened up my day  - thank you so much for posting! :)

annamilena's picture
annamilena

Great advice - has been four years for me now. Please trust Matia she hold a tremendous wealth of knowledge and is really able to to help. I also found yoga very helpful. This is a a horribly stressful, challenging condition but if you keep at it you will prevail. For everyone actively sharing their pain on this forum there are many others who like me, absob themselves back into formal life as soon as possible.

Mimij67's picture
Mimij67

Hi Anna!
Thanks for checking in! Great to hear you are pain-free! If you read this, How did you know when yoga would be safe?
 

If we don't excel at health, the only other option is disease.

annamilena's picture
annamilena

 
Hi,
I always did a little but of yoga and also a daily meditation practice (might  be better if yoga gives you discomfort). It really kicked in towards the end/last year of my recovery when I did about an hour a day, so it got me from 90% better to 100%.I'd check with Matia.
Some more details below following on from pmsgs:
Symptoms & timeline:

  1. I was ill for about 3 years in total, main symptoms were frequency (hundreds of times p/d to start with), lack of sleep, constant discomfort, moderate pain when flaring. 
  2. Found Matia after about first 10 months). The thing that makes me most angry is reading about Matia early on  and not contacting her immediately. Now I have done more reading on IC I think Matia has the strongest track record in real recovery among all the available therapes.
  3. I was significantly better within a few months of working with Matia (was able to go back to work, exercise etc)
  4. 85-90% better after about 1-2 years and eventually fully recovered,

Stuff I found helpful/interesting

  1. Take Matia’s advice to the letter and be extremely meticulous about it (eg different supplements and different non active ingredients – some will remove pain some will cause flares). Also, be extremely clear and detailed about how you feel and what is/is not working for you. You are in this together with her. A lot of the stuff Matia recommended in 2004-5 is now mainstream advice. She really does her homework – trust her.
  2. I found conventional therapies problematic (hydroxyzine, amitriptyline other more drastic were suggested and I am very glad I did not take them up
  3. Your triggers are not other people’s triggers – 18 months in I could drink coffee, eat tomatoes and even spicy food! Eating a spoonful of msg spiked soup will send me to the bathroom a few more times and an MSG meal will make me ill for days.
  4. Fight this and remember for every person active and unwell on the forums – yyou can check this for yourself – go back a few years and see who was around and how many have gone away from the forums and back to their daily normal lives.
  5. Every flare has a cause – if you cannot determine what it is this may be because you are constantly flaring. But IC is subject to the same cause and effect as anything else – so look for your triggers, It could be something like tap water or your partner’s aftershave.
  6. If you have a conventional medicine doctor with had enough common sense to work and think with you, rather than apply/test procedures on you then stick with them. I was not so lucky.
  7. Read success stories – this fight is in the mind – statistically you WILL get your life back.
  8. Make a list of all the things that have worked for others and work your way through it.

What recovery means for me:

  1. I have a very busy work life and go out partying/drinking at least a couple times a week (yes Matia would be rightly p**** off about this given the effort she’s put in to help me)
  2. I work out between 3-5 times every week, usually spinning classes (my knees are messed up so cycling is easier on my body)
  3. Last year  hen I worked about 8 miles away from my house, I cycled there and back every day
  4. I rarely ever think about IC or my bladder. Something I read in a success story  a few years back was that it ‘melts back into your body’ -  this is exactly what happened.
  5. Matia is a role model for me. She has tremendous passion, determination and professional rigour. I consider myself very lucky to have the benefit of her excellent advice.
  6. I meticulously check every single food label – if its any kind of a chemical, or if I don’t know what it is, it does not go in my kitchen. I never eat in fast food restaurants (or anywhere that might put in food things that are not food i.e. chemicals, in human food)  All food we eat at home is organic. I only occasionally eat non-organic food when eating out. This is expensive, but it’s cheaper than IC!.
  7. I have had two flares, about a week each, since recovery, They were caused by MSG and sleeping in sheets washed in biological washing powder.

I can only apologise for not posting this sooner. Happy to skype (London based)/or answer any questions – please pm me if you’d like more details.
All the best,
Anna
 

deir's picture
deir

DO you think someone who has had no improvement for 2 years has a chance of recovery? I really need some encouragemnt

Annika's picture
Annika

Wow Annamilena. Thanks so much for posting your story and all those great advices. Makes me so happy to read this. :)

Annika's picture
Annika

Oh wow, I just love this thread. Thank you for sharing Anneke. I had tears in my eyes reading it. So glad you are feeling  better and having hope again. Making plans for the future will boost your energy and likewise your healing process. I´m very excited for you and I have no doubt that you will feel normal again. Keep up the spirit!

Mariposa's picture
Mariposa

Thank you. Thank you so much for this. I have been going through a very difficult period and have been having such a hard time staying positive. I feel like these stories were posted at the exact time that I truly needed them. It's amazing how consuming it feels to be in this process right now, but when you post Anna and Wen it just seems like such a non-issue. Hope to get to that point!
 
Love
Hannah