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I do a lot of searches for various topics and I always wonder how the poeple are who posted like in 2008. Wouldn't it be nice to hear from people who are on the other side of IC now?
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Do old recovered patients ever post here?
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A few threads
Here are a couple of really, uplifting and positive threads you can search for in the search function
The Little Things *Positive Thread* (in Dr. Brizman's Protocol)
Length of Treatment (in Spiritual Discussion)- This one is particularly good!
I literally read this entire site when I first started treatment almost a year ago- I went through every Blog by Dr. Brizman, as well as Forum Topics and there are SO MANY success stories (besides the ones posted on the success stories link) and positive feedback peppered throughout the site. I think its really important to remember that MOST people are not posting after 2-3 years anymore because they are MOVING ON! And as much as I told myself in the beginning of this that I would post all the time to encourage people (I still tell myself this, as I am still in the thick of treatment), when you feel better, I truly believe you just want to move on with your life. This dis-ease takes up enough of our time/life as it is!
Remember this is a marathon, not a race and in the scheme of your entire life, we will all look back on this period of time as just a snippet of time in which we were forced to really take our health into our hands and make changes that sometimes seem insane, but are so very neccesary to ensuring a long, healthy future.
At least this is what I tell myself each and everyday.
I am so down right now, i need to read the positive threads
I am having a major flare up right now, and my soul is in such darkness, i am at work behind my computer, and barely keep my eyes from tearing. Thought i was ready for intimacy with my husband, it was more painful than it ever was since i started treatment i don't understand. It could be the japanese crown condoms? the increased dose of bifido? a kiss by my husband who had some beer earlier? I almost don't care anymore right now. Thank you for the link to the positive threads, because i am so sad right now, i feel so worthless. :(
((((((selichan))))) I am so
((((((selichan))))) I am so sorry you are feeling so down. The loss of normal intimacy has been the hardest thing for me. I used to think of myself as so lucky to have such a great sex life with my husband who i love. It has really changed how i view myself. The only thing that helps me is to remember that like everything- THIS IS TEMPORARY! you are not worthless. Think of the huge endeavor you are so bravely undertaking right now by following this protocol. Youare so worthy and on the right track.
Thank you
Dearest (deir). THANK YOU soooo much for your kind and encouraging reply :) It meant so much in such a vulnerable moment!! Especially when you said "...like everything, this is temporary" I've been doing my best and following the protocoal strictly, and so getting such a bad flare is like a slap in the face, you feel like you are not getting any better, and that it's still there mocking you. it just really messes your psyche even though you KNOW that there will be ups and downs on the journey. You fear that maybe you are not one of those that can be helped, than fear loosing everything that means so much to you!! I know the moment i loose sight, and get overwhelmed by my emotions, i give in to the pain and then the pain is unbearable. I still have a lot of pain, but i am slightly better, so i know in a few days my pain level WILL go down, just have to be patient. I hope you all the best to you during your treatment and a fast recovery!
I consider myself mostly recovered as far as the bladder
I consider myself mostly recovered as far as the bladder, as Matia got me almost all better 1.3 years in; it's only a leg injury w/ fibro-like reaction after that then derailed me, but for the most part it hasn't derailed my bladder amazingly! I don't come on all the time but I try. There is so much hope on the other side, though it can feel improbable or impossible at the time. Like I've often said, you don't have to even believe for sure you'll get better, just look at the evidence which is that most people get well, and put your trust in Matia who is a bona fide expert as well as unbelievable human being.
deir
I am not THAT old of a patient. But what I would like to add, is that I think for me at least, it is hard to come on here and post sometimes. It is a very emotional thing to be almost a year and a half in, and still really struggling. I am afraid to scare off new people. It makes finding support very difficult. I know that this is up to me to get over, but I worry about discouraging people. Some people are horrified and being in treatment for that long and not being "better". Which is actually very naive, since we are fighting against a chronic disease that in western medicine there is NO hope for every "being normal" again.
I except where I am in treatment, because I have seen many small improvements, and have had IC for over ten years. I really don't and don't think I should expect anything better then having a Dr that is there for me, and taking one day at a time.
I do understand how you feel though, that is how I felt in the beginning too. But now I see that sometimes it's not only because people have gotten better and "moved on", but also that some of us are still really struggling even though we have been in treatment for a long time.
That all said, keep your chin up! Your on the right path.
Where do old patients go?
Hi Hopeful - it's been awhile. Nice to "chat" with you again. I like you am not horribly "old". It's been about 15 months. I just wanted to let you know that I "get" how you feel about communicating when you aren't brand new. For me the symptoms are now so different from what most new people are struggling with. My bladder urethra symptoms are nearly gone, I get to eat pretty much anything off of any of the lists. I still have to be really careful to keep my mental health balanced - I am a real nut job when it gets out of whack. So, I'm on quit a bit of herbs to help that. I still get blinding headaches, sinus and ear problems still hanging in there, tremendous muscle pain has lessoned, crazy floaters in front of eyes and look like crap from exhaustion - wondering when I'm ever going to "arrive". YES, I KNOW the saying that life is not a destination but a flipping journey. AND, in all honesty, this is also financially draining. I might also admit that I have my moments of rebellion when it comes to following certain protocols. I actually remind myself of my kids when they were young. When they were really sick they were timid and quiet. When they started to feel better, they got restless, obstinate, and vocal. So, I choose to look upon this attitude as positive :).
You all take care - from a "middle age" patient.
I want to encourage anyone
I want to encourage anyone reading this to keep up with this web site. Keep reading and learning. There is a lot of love here and also wonderful people. Your own personal support group. You are in charge of you and your health. Matia has a wealth of knowledge, but don't forget to think for yourself too. If something does not sound right or feel right, let her know ASAP. Don't feel embarassed... this is an intimate disease and she has heard it all. After 2 years my pain is mostly gone and if my diet slips my bladder asks me to eat a big salad.
Keep trying with the diet and do your best. I know how hard it is and it takes a long time to really get it, find the foods, how to cook them, and find the time and money to do it all. Be patient and keep eating those big salads every day. Tonight I got my lunch ready for tomorrow at work and I put on hard boiled egg, lemon, olive oil, cabbage, tomato, cukes, avacado, sliced apple and ground flax seed. I have learned to be a conesour (spelling??) of kale, mustard and collard greens, and I try all the greens and veggies a the store. I actually love them now and found some that are not so bitter. When you get farther down the lists you can add sliced apple or pear, some cheeze, and nuts of choice. Yummy. I have a big pot of chicken rice soup in the fridge. My husband made me a hamburger tonight.
It gets better. I now do lots of deep breathing... deep cleansing breaths, lots of yoga, streaching, walking in the woods, and shopping for healthy foods. I also work full time and try to educate everyone I meet about eating a healthy diet, and cutting sugar and refined carbs. Also chemicals, dyes, preservatives, of any kind.
Keep reading and learning. Life is good on the other side. You will make it. You are in charge. Pray, breathe, learn, listen.
Please be careful with
Please be careful with flax seed anything!! It can cause days of pain for some people. It is not even on list 5.
This is coming from a very "old" patient :)
i was actually taking flax
i was actually taking flax oil before i found Dr Brizman!! Yikes. This was ok'd by my gyno. This is why I need Matia's guidance right now. I feel like I need to have total faith and leave the decisions up to her. i've done a lot of self treating for things with herbs etc in the past. I had infertitlity and went thtrough a lot of invasive IF treatments/tests. I researched herbs, started on a regime and was pregnant soon after. But this illness is WAY beyond me and my system is way too sensitive and fragile to go it alone. I am struggling right now because i am reacting really strongly to the herbs but I am trying to get my mind back to the hopeful optimistic place it was. I keep thinking I am the one freaky case.
Rm-10 Ultra- a bad bad idea!
I took this mushroom based immune system booster along with flax seed pills for 3 years so my immune system wouldn't be compromised. I can't believe how naive i was. I recently told my husband, that hopefully one day if we have kids, i pray to god that they won't be sickly like me to start with, but as parents, i'd do my best to avoid giving them any pills.
Rm-10 Ultra- a bad bad idea!
I took this mushroom based immune system booster along with flax seed pills for 3 years so my immune system wouldn't be compromised. I can't believe how naive i was. I recently told my husband, that hopefully one day if we have kids, i pray to god that they won't be sickly like me to start with, but as parents, i'd do my best to avoid giving them any pills.