Forums:
Hi everyone.... i havent posted for over a week because i have been back to the kind of pain I felt before I started treatment. March 2nd was my 8 month anniversary and i nerver imagined i would still be in this much pain. I had a few good weeks during my 6 month but have been in pain that just keeps increasing since the end of January. Im so sad & happy at the same time to read that those of you intreatment for less time than I have are seeing promissing results and you are progressing beautifully. The pain im feeling is bad enough that I cant get out of bed. Dr. B has been trying to help but so far the protocol is just helping marginally. Im feeling pretty hopeless because im unsure I will ever be out of pain....& it is monumentally difficult to keep fighting when Im in pain. I just want to wake up and do something I love to do for a change. I have so many dreams to fulfill and have been held hostage for over 2 years:(((( I feel like such a complainer but is anyone out there that can tell me that they were still having pain after 8 months & are now doing good.
Amy
Dear Amy,
Dear Amy,
My heart hurts for you. My own struggle has been exhausting. In truth, I've had minimal physical pain - my problems have been extreme anxiety - actually terror. I often feel shame that this is something that, unlike you, I should be able to control. Why can't I stop the terror and hysterical crying, the ocd of not being able to stop rituals? The knowledge that if I take conventional meds for it, my bladder will send me into excruciating pain. If has often ruined my own life and those around me - sometimes I see no end in site. So, I get your hostage thing with all my heart and soul. How does one keep fighting when hope is so hard to find? Dear Amy, I don't know - somehow we just do it. Because people do get better - I've read others stories on here from those who found their way. So, I'm hanging in there with all of you.
Dear Amy
Dear Amy
I am so sorry to read of your pain!! I hope you can at times look to the window of hope you had in your 6th month. I just keep thinking about those people who took longer to heal, and had a really rocky first year or two. Lots of up and downs and now they are on the other side. Can you reach out ot Angela, or Nadia, or Mary or someone who is out of treatment, or see if Dr. B could recommend someone for you to talk to?? I hope you can find some windows of peace, that you are sleeping ok, that you are hugging your husband and children. I hope you are asking for and getting some help at home. This too shall pass. It will. It has to! You can do this!! Thank goodness for Dr. B. Thank you for your gratitude post regarding her. It means a lot, given your current suffering. Again, this too shall pass....
If we don't excel at health, the only other option is disease.
Amy, I was thinking about
Amy, I was thinking about your post and wanted to reiterate that there are MANY people who were still in pain at the 8 month mark. Many. IC is so tricky. As much as I don't want to admit that I even have it, or that it is so hard to treat. It is. Thank god for Dr. B she will get you through this. There is a LOT of inflammation in our bodies, and it is a delicate process to untangle things and get us out of this.
I suggest when you are feeling up to it, that you go back and do a search on Mary (Honeybee) or Nadia (not sure her last name) posts. They are both elequent on this issue of time in healing. Also Lisa Ann is just now starting to feel much better. There are many others...The long view is absolutely necessary (when you can stomach to think of it this way, I know I struggle with this too!)
xoxo
Mimi
If we don't excel at health, the only other option is disease.
AmyBarbara-
AmyBarbara-
I think I understand your fear and despair. Although I am far from as severe as you- I am taking a long time to really see improvement. I hit an emotional low point last week but I am on the up and up right now. I believe that each time I really get desperate with fear and doubt, it is like I go to the next level of acceptance somehow after I allow myself the time to grieve. My friend had said some breakdowns can be breakthroughs.
I truly believe that although this disease is tough and took many years to unfold, we are doing all the things necessary for healing and we will get there. I know I have a lot of stress with my young children and I think yours are around the same ages?- of course I love them, want them and am grateful for them but geez- can't i get a break!!?Raising kids is relentless. I hope that doesn't upset you more. For me it helps explain one of the factors that may be why it is taking me so long. I really never can catch a breath even with the best husband and all the tools in place.
There are many people who took over 2 years to see relief. Somethign that recently helped me was to know that at times the progress can be exponential. SO you may go from a to J where some one else goes a, b, c. I know that helped me a lot because I would hear people say that had 3 good months or something and i'd think, "great!! I still need to get to 3 good days!!!"
Anyway- I hear you today and I feel like I have been in that dark place, you will get out of it. (((HUG)))
I have a feeling that people
I have a feeling that people with no other issues but bladder MAY heal within a year. A lot of others, at least who write here, take longer, up to four years. Hope you are taking one day at the time. You will get better.
Thinking of you Amy! It is so
Thinking of you Amy! It is so hard to see the light at the end of the tunnel when you just seem to be stuck, and no one can tell you when you can expect to feel some relief! This is definitely a marathon not a sprint to the finish line! You will heal, take each day in stride! Hang in there! We are all routing for you!
These posts have me in tears.
These posts have me in tears. A beautiful testament to our human spirit. My heart goes out so much to each of you and it eases my psychological load at the end of a tough day. We will WE MUST be delivered from our pain. EACH OF US. WE TRY SO HARD. That has to be enough. Amy Barbara and Deir, I hope your bodies give you a breather tomorrow. And Denise, thank god for your honest posts! I say to myself that if you can, I can.
I am sending love to each of you who posted under this heading.
Bonnie
Dear Dear Bonnie,
Dear Dear Bonnie,
Thank you for reaching out in your own struggles - I just read your last post - it was so honest, so giving, so much like the person I feel that you are.
All my best to you and to everyone.
You poor thing, hang in there
You poor thing, hang in there.
Stay positive, read your favorite poetry, or listen to music that inspires you. Baby steps. 8 months seems like a long time, but it's not a long time in the grand scheme of your life, and if it takes another 2 years to get better, in the grand scheme of things that's just a blip on your radar.
You have so many years of health and happiness ahead of you! Keep fighting, and let your light shine.
Lots of love and support and healing energy!
Hannah
Amy,
Amy,
The pain you're in is just a bump in the road. I've had lots of them in almost two years in treatment, and I still have a ways to go. I have had some major improvement lately, but it was after going through six weeks of in-bed pain. I got through it and now I'm doing better than I was before.
Make sure you are following the diet strictly and don't let anything touch your skin that isn't approved. Also, I found out that I am sensitive to even naturally scented products. If a cleaning product is scented and has a strong smell, I can't be in the room or it affects my bladder. Just be aware of this possibility in case it might have something to do with your pain.
If you want to talk, please email me. I would love to help in any way I can.
Lisa ANn
Lisa ANn
The household producsts is a VERY good reminder. I am trying to only use water mostly when I clean.
Amy, check your toilet paper too. Did you see Dr. B's blog on TP? Make sure you are not useing recycled paper. And make sure it is virgin paper with very few additives per the blog post.
If we don't excel at health, the only other option is disease.
Thank you everyone for all of
Thank you everyone for all of you kind, beautiful & hopeful words. Still in pain just waiting for that small window of relief that I did feel earlier in treatment. It has been 6 weeks of bed ridden pain...so I think im due:)))Deir Im thinking & praying for you too. Honeybee reached out to me in an email & referenced something you had said in the past. "There is breakthrough in the breakdown" Im still searching but I know I will find it. This whole experience is a mental & physical breakdown & while anxiety got the best of me before I knew what was wrong...alot of panic attacks. I find much comfort in knowing that I will heal. The mind racing & constant worrying, obsessing has made way for peace. I cant control any of this but I can try living in the moment more so that all of this madness dosent hurt my childrens growth & childhood. My kids began to show signs of panic & thought I was going to die, because when children see their mom in bed for weeks at a time they are affected. Because I have worked so hard on the mental side of this I know that they are doing better & we will all be in a better place someday soon. I hope all of you know that when you take the time to reach out & let one of us know that we are not in this alone, its like a huge weight is lifted and replaced with hope & light. Next update for month 9 i hope I can say that I am having better days & moving in the right direction.
I look forward to hearing
I look forward to hearing your 9 month update! I will be saying extra prayers for you! Just saw this quote and thought I would share "You have to fight through some bad days to earn the best days of your life." -unknown
Hang in there Amy and everyone! We are fighting hard and we WILL be enjoying many great days very soon and for many years to come!