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Hey Ladies,
My two-year anniversary with Dr. B is coming up in May, and while I am thankful for the progress I have made, I'm still so extremely limited in some really important things and it's bringing me down.
I still can't drive because the pain is excruciating when I try to do it. I am so tired of being housebound and relying on my family to take me places.
I still get level 7-8 pain when I eat two bites of something new, so I haven't moved forward on the diet. I've been eating the same six foods for the last year. Dr. B feels like it's more important right now to keep me out of pain than to worry about food. I trust her, but I can't help worrying sometimes about my lack of nutrition. I eat grass-fed beef and spinach everyday, so I know this is good. I also eat chicken, lettuce, and cucumbers but I feel like those aren't as nutrient-rich. My starch is potatoes and I eat butter and olive oil. Everything I put in my mouth is organic (except the olive oil).
Movement is something that causes me extra pain also. I had a really great few days a while back and took a walk in our neighborhood (20 minutes), a couple days later, my pain went up again. Anything that moves the lymph makes me hurt more. I'm just so tired of being stagnant. I can stand and walk around my house and get cleaning and laundry done, but that's about it.
On the positive side, my pain levels don't usually go above a 6 when things are flaring up (except when I try new food). They used to go up to 7-8 on a regular basis. My husband and I are having what Dr. B calls "our version" of sex (because it's not the full deal-if you catch my drift) more often, which is great, but this also keeps my pain level slightly up.
So I'm making progress, but it's at a snail's pace. And when my protocol changes, it's literally adding a drop of something or a pinch of something because these tiny little changes make a huge difference in my pain level, either good or bad.
I'm super tired these days. One of the herbs that I'm taking is helping my bladder tremendously, but Dr. B says it's also very draining. I'm battling depression right now, which is one of the reasons I'm reaching out. I don't often write about my struggles because I feel so different from everyone else. But I just have to reach out. I am so ready to turn a big corner!
I read everyone's posts everyday even though I don't respond to that many of them. I just don't have the wherewithall to encourage everyone like I used to. I still believe this treatment is our best hope for recovery and I strictly follow the protocol. I'm just so tired.
I had a call with Dr. B a few days ago, and she feels like this is a good dose (I agree), but that there is something missing that we need to add. We are going to try adding a drop of SF722 and see what happens. I am waiting for it to arrive in the mail. I'm trying not to pin my hopes on this one drop of SF722 :)
This journey is crazy hard, isn't it? I have so much to be thankful for and yet there is so much I grieve not having.
Thanks for listening,
Hi Lisa Ann,
Hi Lisa Ann,
You are not alone!!! After reading your post I could relate so much to what your feeling. I have been in treatment about 18 months now, My diet sounds extremely similar to yours. I have been approved to try list 3 but am still so symptomatic I am scared to do so. Just last night I posted about trying to do some yard work /got overheated and flared with severe itching and rashes.
It can be so exhausting and depressing to regress - but it is grasping onto the small steps that eventually pull me through.
The ups and downs are tough - but necessary to eventually balance. You will turn the corner. This site is filled with some of the most beautiful and kind and caring souls.
Thanks for sharing - your words helped me to feel better this morning even though I am itching to death.
Breis
Dear Lisa ANn- I hear you. My
Dear Lisa ANn- I hear you. My husband was saying to me that it seems like the Spring may be getting me down. I am also coming up on 2 years and I htink i have a really hard time with anniversaries. I am also not where I want to be and so when a date comes around that has some meaning, it is hard for me to stay in the present. I understand about what you mean by being tired. Yesterday I was saying to my friend, "I am ok- I can do funstion- but you know I am tired of this- I want to bleach my hair, drink a beer and have sex" Geez- I sound like a serious floozy! lol
Your case is really tough (!!!) and I admire you so much for you perserverance, courage and every other good thing. You have helped me so much even though I feel like a baby complaining because I am not close to as severe on a daily basis. For me, the main fear is in the perceived lack of progress and the sense of groundhog dayness.
But here's what I thnk (on good days!) If you have seen some improvements at times even if it goes back to bad, your body has the capability for change. In March I had almost 13 days of almost normal for most of the day. It was amazing. I keep thinking, if I had that once, I will have it again for longer.
I hope those of us who take a while will start having exponential recovery. it is truly possible. Every day I pray for you.
xoxoxo
hahha- my typos are hilarious
hahha- my typos are hilarious. "I can function"
Hello Lisa Ann! First off
Hello Lisa Ann! First off sending a huge hug!!! This is so tiring! I now this process is the longest slowest going I have ever experienced! You are making great progress! That is fantastic you are now able to some normal day to day tasks around the house, and have some intimate moments with your husband, whether it is exactly the way you pictured it to be or not, but this is also great!
I totally relate with the food! Dr. B has asked me to try to push through some of the pain to see if I can add a few new foods, but my stomach and bladder have a few choice words about this!:( I feel like this will never change. I have started to tell myself that maybe it's time to put on my game face and see if I push through pain several days of adding a food my body will just give in! Haha! Well, I am trying to get the courage to push past the first 30 minutes when my stomach starts stabbing me like crazy!! I too fear about the nutrients, I am obviously able to function and go to work, but on such limited food for just over 2 years my energy is sooo low! I don't know how long I can keep this pace up and meeting all the expectations at work and acting like everything is hunky dory, but on the other hand I need this interaction to keep me going and keep my mind busy!
I do hope the SF722 does wonderous things for you, that would be fantastic! I too add a pinch here and a pinch there and see effects of those changes quickly! Whether good or bad! You are not alone! I think many of us are this way, so very sensitive! When I was in CA I would sit in the office and hear Boaz rattle off different herbs to a patient and the dose he wanted them to take 3x/day, my jaw about hit the floor! I don't know for some reason I thought one capsule was pretty much what we were trying to work up towards, but taking 4 goldenseal along with a handful of other herbs 3x/day! Oh, I could feel the pain and burning just from him talking about it! LOL! That was an eye opener for me!
You have come a long long way on this journey and though it is painstakingly slow you are making progress and we will be celebrating with you when you are writing in the past tense and how this is was all just a very bad memory! Thinking of you each and everyday! Keep up all your hard work and keep us posted!
Thank you so much, girls!
Thank you so much, girls! Your replies mean so much to me! It's so good to know that I'm not alone in how I feel about all this. Sometimes it all just gets to me, and I know you all know what I'm talking about. Your encouragement is appreciated incredibly.
Love to all,
Lisa-
Lisa-
It sucks, I feel you. I recommend emailing some of the creative cooks on this site to help you with food stuff--maybe Annie Berger or Nadia. Annie has helped me a lot with recipe ideas. Also re: progress, I had almost no progress for years, and have finally had a little bit lately. Its all good, you'll get there.
What always gets me is how normal this lifestyle seems to me now. I've been in treatment for 5 years in July, and I tried explaining it to some girls at my school and then stopped, because they looked at me like I was nutty.
:)
Hi Lisa,
Hi Lisa,
You are incredible. My god, you've been through so much and it is NOT easy to be ill for so long, and especially to have limited mobility body-wise and car-wise. I am just beginning treatment, but I am fully aware of and trying to come to grips with each day, that the symptoms I am experiencing right now may be with me for the next few years, and I need to develop the strength and patience that you have developed in order to push through it.
The path we have chosen is not an easy one. I know that I can't relate with being in treatment for a long time, although I have been suffering from IC for a few years and have been scrambling back and forth between doctors, but I can relate with being depressed since I have suffered from depression ALL of my life. I have to say though, IC has allowed me to explore my depression in a way that was never possible before and has ultimately made it possible for me to liberate myself from the negative thought patterns that kept me down for so long.
I had written an extremely long response to your message but decided that I didn't want to ramble about something you may or may NOT be interested in. Essentially, what I wanted to say though is that I have found some extremely useful ways to counter my depression, and actually IC has given me the tools to do that. If you ever feel that you need support in depression please don't hesitate to reach out to me via email.
The same way that we have to be patient with our bodies, we have to be patient with our minds.
I believe in the progress you are making and have already made and I salute your courage and strength for continuing to follow this path for so long. Having faith is perhaps more difficult than even the physical suffering we are all experiencing. You will heal, and after you have healed two years will be an uncomfortable but brief memory.
Be well,
Hannah
Lisa Ann
Lisa Ann
I have been thinking of you. Did you try the SF yet? What is is supposed to do? II think it is anti-yeast as I have read in some candida forums...?
I think of you when I am driving, and try to appreciate that I can drive, even if I am sometimes unfomfortable. I am absolutely certain that you will be able to soon!!
I also think (this may or may not be at ALL helpful, so I hope you take it in the way I am intending, as a reflection....) when I am fretting about the diet, that people all over the world have MUCH simpler diets and still get reasonable nutrition. And I am quite sure they don't whine like I do about what they get to eat (I am NOT saying that you are whining!!!!). It sometimes helps me to remember that....Maybe it is of no help....but thought I would offer it. I am so amazed by your tenacity and all of those that are still on list 1!!!
Also, I like to remember that I am stable if not where I want to be, without a portfolio of western drugs to manage my IC. I know you know what I mean. Think of all of the women out there that are enduring this imbalance over their lifetimes by taking 4-5++ western drugs with all of the side effects. We are able to remain stable without that. That alone is an accomplishment (I know, it is not where we want to be ultimately, but it helps me sometimes to remember this!)
((Hugs))
If we don't excel at health, the only other option is disease.