Vent:- Christmas time was the worst flare I have had in a long time. Physically and mentally I was a wreck.
Hope:- being as bad as I was helps me to see that although it is barely noticeable day to day- I must be improving because I haven't felt that bad ( for days on end)for a long long time. I always think of what SarahC said it is like filling up a pool with drops of water and one day the pool is full.
Hope: Had my call last night w/ Dr. B and she gave me so much positive hope! I got approved to move to List 3 (although I have barely touched list 2 for my fear of flaring). I also had my hair colored for the 1st time with no flareup. Mild discomfort. the pain is lessoned.
Vent: too tired right now, didnt sleep well and will try to get some zzzz's tonight. Oh, I have been peeing more frequently, especially at night. Dr. B says is part of the waxing and waning... and will only get better...
vent - i'm so sick and tired of dealing with this vaginal pain.
hope - i am getting better little by little. i just need to give it some time and be patient.
Hope: I had an appointment with Dr. B today and I'm almost ready to start List 3! She said I could start in a few days, and when I told her I hadn't even tried everything on List 2 yet, she said to finish adding things from List 2, then I could start List 3 at my next appointment. After being on List 1 for so long, I didn't think I'd be through List 2 this quickly... wowza. It was my personal goal to be to 3 by my one-year mark, so the possibility of being on it at my 4.5 month mark feels amazing to me.
Vent: Most of my super sharp pain is gone, but still dealing with this vagina burning and this strange feeling like a feather boa is being strung through my urethra. So weird and not very awesome. Also having trouble mentally and emotionally with all of this. I have really positive days, then other days I feel sorry for myself and get upset really easily. Hopefully that'll change as I get into better balance.
Vent: I ate something last night that someone in my family assured me was safe for my diet, and I was skeptical so I only ate 3 very small pieces. Good thing, because I am swelling where I prefer not to swell. If I am not struggling in one area, then I am struggling in another. I am having hot flashes so often that I thought I was super menopausal, but Dr. B told me that even if I was 22 I would be having these - a die off symptom. They keep me up quite often at night. My hair is super brittle, so everyone keeps getting it in their food. My son was pulling a blond hair out of his hash browns today, and I didn't even cook them! My husband says I need a hairnet. :)
Hope: My eyes are not bloodshot like they used to be, and they are not as dry as they used to be. I didn't flare on list 2, so now I have been trying foods from list 3 (Dr. B knows), and so far it is going well. I had two tablespoons of coffee and did well! It was amazing.
vent: I am so bored with being such a vigilant worrier. It would be such a relief to think about something besides IC. And I would really like to get over this constipation business.
hope: I seem to be tolerating cooked onions quite well and so my meals have become MUCH more flavorful. Carmelized onions on a hamburger is my new favorite thing! And I was also able to have sex for the first time in 4 months and I didn't flare!
Vent: At my last appt, Dr. B tried to take me off Goldenseal. She thought it might make me feel a little better, but no such luck. I had such an increase of pain, it was horrendous. I'm back on it now (and feeling better). I'm just kind of discouraged that I wasn't able to handle that change yet... Although my herbs tasted a little better when it was out! haha. Goldenseal tastes so nasty.
Hope: TMI, maybe, but I had my first minimal pain, consequence-free sex. This makes me feel so hopeful.
Vent: I'm so tired of waking up with burning, day in and day out, wondering when this will all be over so I can "move on with my life" and think about the possiblility of having kids, eating some chocolate once in a blue moon, or having sex without worry of a flare up.
Hope: After a few agave cheats and treats around the holidays, I noticed a much calmer response from my bladder and fewer facial breakouts from dairy. Could this mean the leaky gut is beginning to heal? I do hope so.
Sorry to hear about your vent. Have you been in treatment for a while now? Are you improving? Where is your burning?
Vent - Rhodiola tastes AWFUL! Like someone put old, dusty potporri in a food processor. I was taking it in the cap because it was sooo bad but Matia says I should really try and get it down with out the cap. And I always found it funny when someone would whine about the taste of goldenseal and oil of oregano. I never found either of those to be that bad. Anyway, I'll live but just know it's gross if you have to take it.
Hope - I never thought it would happen but I have been sleeping through the night. I think I have the past 3 nights. Matia always asks me if I am sleeping through the night and I never was and I really never thought I would so this is great progress. Plus after 2 months of feeling pretty much the same my bladder seems to be doing much better the past nine days!
Vin-Have been in treatment 2.5 years but haven't been 100 percent strict on the diet (pretty close though) and my flying schedule, we think, is much to blame for my slow progress. I have made definite improvements in so many areas since starting, but the progress seems so much slower now than it was at the beginning. My burning is in my bladder and urethra very early in the morning (the lymph is stagnant and all the toxins are settled there I guess). I also have burning when I drink large amounts of water and sometimes after meals. I know there are probably things I am eating that are bothering me, but I've been doing this for so long that I just tolerate the minor burning during the day so that I don't have to go backwards on the lists. Like, I know almonds bother me slightly and apples too, but I eat them anyway because they are just so convenient for my traveling and I can't think about giving them up. They were approved a while back for me, but they still aren't perfect. I just can't figure out why the early morning burning isn't letting up. Matia says that's the last to go usually as it is a sign of the large intestine still being unbalanced. It's so frustrating. I can sleep through the night though which never happened before.
Vent Vent Vent!! Having a horrid middle-of-the-night flare right now. I should have known this was coming... this morning was no good, and mornings are always good for me. It's the same type of symptom that I had back when my IC first started. My first IC symptom was a feeling like a sharp fingernail scraping the inside of my urethra over and over and over... until it's so raw that it's on fire/sore/sour/unbearable. That's what it feels like now. I always feel my urethra in some ways still, but this is different. This is how it was before, not how it's been feeling lately. I might be making this up, but I thought i remembered stories saying that symptoms left in the opposite order which they came? Most of the symptoms I developed later in the game have significantly subsided or gone away. I hate that this is the thing that is lingering because it's the thing I most want to go away. I do have my period, so I'm thinking it could be hormonal? It's hard to think logically about the cause when flaring though... I know you all understand. I'm kind of mad because I was really doing so so well the past couple of weeks. Maybe I pushed myself too far. Maybe I did too much. I have been really busy lately. Maybe I overdid it. I'm finding this particular flare to be very difficult because since it feels just like it did when my IC started, all of those same emotions and memories are coming back up. The desperate feeling. That fear. I hate that fear. And on top of it, I just got a sore troat. Maybe it's die-off? Could this whole episode be die-off? I did eat out Friday night, but I had something that I've had before... maybe they put a different seasoning on the steak? Could it be that the cow was fed antibiotics? God, IC drives me crazy. Seriously. Crazy. And my sleep has been so good lately. I haven't even been waking up in the middle of the night. Tonight I'm up all night from this mess. So upsetting. I know we all feel this way, but I'm seriously so fed up with IC. I just want to be like, ok thanks for the visit and showing me that I needed to change but lesson learned and you can go now.
Hope-- And I still know that even during bad times, it's still better than it was before finding Dr. B. I know I can make it through the night because I've made it through nights much much worse than this... I need to remind myself of that. If it still feels awful tomorrow, I'll email Dr. B. Hopefully it'll subside though. I'm so thankful to have her. And to have this forum and you guys.
Oh Tinkerbell, I'm so sorry you're having such a rough night! We all have been there, but when you're there, it sure feels lonely and difficult. The obsessive thinking and the difficulty of getting through each moment are sooo familiar. I hope you're doing better this morning.
I thought this might give you a little hope: Almost 2 weeks ago now I had a terrible spell that sounds a lot like what you're dealing with at the moment. Dr. B changed my herbs around and I have to say in the last 5 days I have had minimal to NO bladder symptoms at all. I have felt grateful every day for this amazing relief- and amazed that my body can go from excruciating pain to almost normal in a weeks time! You shoiuld definitely email her!
I hope you get some relief today!
Claire
Thank you, Claire!! I was able to get a few hours of sleep this morning. When I woke up, it had subsided a bit although wasn't gone, but as the day is going on, there is more pain. But it's different pain even from last night. Like it's shifting and changing. Not sure what this means. I did end up emailing Dr. B today, so just waiting to hear back. Thanks for giving me hope that this could be over soon! It might all be related to hormones, but I'd rather email her for her opinion before suffering needlessly. We're really so lucky to have her. I'm so thankful for this forum too. And thank you for listening to my late-night ramblings!!
vent: I'm really feeling terrible, and have gone back to list 2. I also have a class with TWO people in it, and I'm needing to pee the whole time (2 hours) and unable to!! It is a literal torture test. My progress has been not great--although part of it is my cheating early in treatment (I'm totally strict now).
hope: I'm feeling a little better this week than last, but not much.
:( I'm sorry you're feeling lousy! Did Dr. B put you back to List 2 or are you doing it yourself? Just curious. I hope this lousy spell straightens up for you soon!
She said to try it to see if it helped (it hasn't). Stuff I could eat before--tomatos, almonds etc. started bothering me.
I am praying for you!!!!! You poor thing. Hang in there. All I can say is I know how hard that is!!! Better days are ahead.
Sorry you are sick...and here I am at home with my first cold since I got IC.... suddenly I feel much better about my situation. I hope you and all your kiddios are feeling much better!
Vent: after eating so well and teaching others how to eat well to stay healthy, I am home sick with bronchitis for the past week and it isn't getting better. Matia is treating me with herbs but nothing seems to be helping. I am wondering if cheating over the holidays with sweets here and there (not a lot though!) could've derailed me this much after 3 years of treatment? I feel like a hypocrit living and preaching this healthy ifestyle and now not being able to get off my couch for a week. I worry that i am majorly regressing as my last bronchitis event was just prior to the onset of my IC before i knew matia. I really have not been sick much since working with her (a minor cold and some stomach issues, that is all).
Also, I had an anxiety attack last night after I think I took the herbs too close together. My heart was racing and i could ot stop tossing and turning. Then I had a nightmare that I was going to end up at the hospital for this and when they asked me what herbs I've been taking, I can't really say because they are Matia's special formula and I have no idea what I'm putting in my body, I just trust her. And all the doctors and nurses were standing around rolling their eyes and I was begging them not to give me antibiotics. Ha!
Does anyone know what the heck is in Ear, 48 and 49 anyway? I'm also on GML and ZGL by plum flowers.
Hope: I have not had bladder burning (my biggest, toughest hurdle) for the past 3 mornings. I find it interesting that coming off my normal protocol for this bronchitis would make me feel better in my bladder? I'm completely mystified but it's been a nice break from that annoying aspect.
Sam, do you think the burning you're experiencng could actually be die-off? Things leaving your body? If your normal protocol herbs are killing things, then it makes sense that when the herbs and "killing" stops, the die-off symptoms would stop as well. Perhaps your burning is actually a good thing?? That would be my first thought. In any case, I hope you're doing better with the bronchitis issue :(
My bladder also feels much better when I am on a cold treatment protocol. Once the cold is over, my bladder symptoms return The body is so interesting.
Still on the bronchitis protocol but the morning burning has returned. Oh well. I got 3 glorious mornings. The bronchitis is very slowly easing up. I am going on day 9 of this thing and have left my house 4 times. I hope nobody else ends up with this! Matia has been wonderful getting me through it but it is so slow in clearing up. I finally feltl a little more energy today, I was able to shower, cook a bunch of food, and even take a short 15 minute walk outside. Had to take a nap later on, though. Ha!
The last time I had bronchitis was 4 years ago exactly, a few weeks before the onset of IC. I wonder if this is a sign of regressing or rather a sign of a healing crisis? Like I'm going back through past illnesses as I get closer to healing? I hope it's the latter and this is some sort of die off/cells clearing out!
Hi Sam,
Hope you are getting better and over your bronchitis. I had similar fears everytime i get sick, i am constantly worrying about it turning into pneumonia or something and that i'd b forced to take antibiotics. Thanks to matia, since october i overcame flu 3 times, nasty ones too where i had to stay home for 10-17 days. Interestingly i also had a lot of strep throat, which i used to get as a child and why i started antibiotics so early on. Mati believes that it might be die off, since i used to get sick this way before, die off is presenting it the same way. I've been on ear and gan mao to boost the immune system but just thought to share with you that matia doesnt think this as regression. Hang in there and feel better soon.
Wow, thank you, that is really good news and interesting about illnesses remanifesting now as we are healing. I'm so sorry you've had the flu 3 times! Yowzer! This has been no fun and the GML is so tough on the bladder as you know, so I hope this is it for me. I live in a high danger tick/lyme zone so I usually end up on the GML once a year anyway from a tick bite. Hoping I don't have to go on it this spring again when the nasty things are out. Thanks again for your encouraging words.
I was just re-reading through this thread and saw my last post about fearing a tick bite again. Well, it happened this week and I am back on GML and Ear along with goldenseal (ick).. I am so sad that I have yet another "thing" to interrupt my bladder protocol. Bronchitis in Feb, now this. I was back on list 2 and doing a cleansing protocol and finally starting to see an inch of progress and now I've had to interrupt it all and switch to these herbs which semi-flare my bladder. Oy! I thought I might even have to go on antibiotics for this tick bite but so far so good, no rash. Fingers crossed.
Does anyone have experience with Lyme? I am in such a funk over this tick stuff, it kind of makes me want to move! It's really scary and hard to decide whether to do the antibiotics. Matia has me on the herbs for now but I honestly think it would be way worse to get Lyme than to take a dose of antibiotics with a leaky gut. And I am very much against antibiotics! But the risks of Lyme seem to outweigh the benefits of not taking the drugs. My doc told me, though, I don't have to take them necessarily unless I get the bulls eye rash or develop symptoms. Ugh, neither one is a great scenario really. Anyway, just venting my frustration with all these interruptions in my healing progress. Thanks for reading!
I hope the tick bite didn't develop into anything. I have not had a tick bite, but I don't blame you for being concerned. I hope Matia's protocol is working well for you and keeping your bladder calm.
Great Christine. Sleep is important!
flygirl sam- I think your gut is definitely beginning to heal. That is great.
Hope- I am on a good run! I can't believe it. Even though December had a the worst flare ever- the actual number of good days was still more than bad so that is really good. It's hard to remember that when the bad spells are really bad.
Vent- still miss wine. Nothing else.