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Hi Ladies,
I am feeling the need to reach out to you..... not only because we are such an incredible source of strength for one another, but because I learn so much from reading different IC experiences. I would love to hear your opinions, thoughts, empathy on my most recent healing journey;)
This is my 10th month of treatment! I cannot believe time has passed this quickly! There are many improvements and my days are mostly normal. My bladder is doing very well. Sometimes a slight frequency or mini flare, but nothing compared to this time last year. I am sleeping much better. I get up once a night and often I don't even remember that I did because I go right back to sleep. List three is going very well and the only thing I have yet to try is beans....whoever thought I would be so excited about white beans!? This treatment truly does change ones perspective...lol.
Here is my question..... have you noticed that you have strange "IC" reactions to a virus? If you have read some of my other posts, you know that after beginning the diet, but before seeing Dr. B, I developed a high heart rate and skipped beats. If life is rolling about normally, the heart rate does pretty well... not perfect, but better. However, I have been fighting a virus my girls had about a week ago and my heart has been nuts. I am, of course, working with Dr. B and we are in the protocol testing mode. The good news is that I have not gotten sick so I think my immunity is stronger.... vs in the past when I caught every single bug within a 10 foot radius, but this heart stuff plain stinks when it acts up and I am curious if others have similar reactions to either getting sick or fighting sickness. AND I am so TIRED!
Are our bodies really still detoxing after 10 months in treatment? Yikes! I must have a lot of junk in me! ;)
Katie
Katie, so glad
your bladder is doing better! And that you have mostly normal days! That is just fantastic. I was hoping you were doing well. :) I haven't had any heart conditions, but I can relate with things coming and going in my symptoms. I haven't been in treatment as long as you (only 5 1/2 months), so I am still learning how something can rear its ugly head again. For me, it's these sores on my head that come and go, joint and muscle pain, and now my eye is getting red and dry again. I don't understand it, but I know my body is slowly healing. My daughter's symptoms are completely different from mine, yet there is an underlying "sameness" in it all, if that makes any sense?
I don't know if this will help, but when I went out to eat with my husband recently for our anniversary, I ate something that I shouldn't have. (Not sure what bothered me exactly as I was trying to be so careful.) My bladder was slightly bothered, but the rest of me was a wreck. I felt like I had the first stages of the flu coupled with extreme fatigue. I was exhausted for three days. My body was definitely compromised, and I learned that I am still in a very vulnerable stage. I do think we will get better and better, but I can see why it takes time and patience. I do think we are still detoxing for quite some time, but I am sure each person is different as to the length of time. I will probably be going for a long time, because I had such a terrible sweet tooth!
sickish and tired
Hi Katie,
I'm so happy to hear you're doing so well! Especially since you're going back to teaching in the fall, it sounds like you've got a level of resilience that you didn't have before. Just wanted to say that I totally hear you on the tiredness and kind of being sick thing. As I posted before, I came down with strep throat in late march and am STILL dealing with it. My throat doesn't hurt anymore but I got these heavy feelings in my chest and ear that just aren't quite clearing and I am just so, so tired. I
My bladder was practically perfect the whole time my throat hurt, but now that that's better, it seems like it's back to its usual tricks...hmmm. I also notice now that when my bladder does act up, my whole body acts up with dizzyness, exhaustion, and I get so cold. Maybe it was like this before, too, but I didn't notice because I just felt that way all the time.
My mom said to me today, "Well, think of yourself as a princess, you can work on things a little, and then have to sit back and rest." I thought it was funny, but UGH, I wish I was more capable and am ready to not be exhausted 24/7. I think we are detoxing verrrryy sloooowly, but lord knows I wish I could speed it up a bit!
Since having this chest heaviness, I've thought of you and your heart stuff often. When you don't know what's going on, it can be quite scarey! I hope your heart settles down soon.
Claire
Mrs. A and Claire, Thank
Mrs. A and Claire,
Thank you for the thoughtful responses! It warms my heart (no pun intended- Dr.B says I do have to much "heat" there;) to feel a sense of understanding for what is going on in the crazy little microcosm of my body. And, YES, I am undeniably better and do have a stronger level of resiliance. I think (and I "think" too often as well;) that a large portion of what I am going through has to do with where my 'thoughts" are. I am facing some personal stress of getting ready to head back to my career and I am preparing to make myself as strong as possible to deal with the pace I know I will need to keep. I am sending my little one to a wonderful little daycare, but a daycare nonetheless, and in the midst of all that I am also applying for a teaching position in another district...... insert deep breath here;) Here is the great thought ....... now I am preparing to head back to work whereas at this time last year, I most certainly could not have gone back under any circumstances and could barely take care of myself and my family... period. That in itself is exciting to say the least.
Mrs.A- I think you are a wonderful gift to this forum with your positive attitude, faith and INCREDIBLE recipes. Your daughter is lucky to have you as a support system.
Claire- I think of you often too and hope you continue to heal from the Strep. It is a very nasty illness and certainly one that takes time to heal, but what an interesting experience to navigate it without antibiotics. The chest pressure is very worrisome and I have felt, at times, there is an elephant standing on my chest! What I have learned is that there is an enormous amount of lymph nodes and lymphatic circulation around your cardiovascular system and the heaviness means your body is most likely processing all that junk out of you;) I like your mom's comment, I think I am going to adopt that attitude for me as well;)
Take care of yourselves,
Katie
Hi Kathy,It's so nice it hear
Hi Kathy,It's so nice it hear your bladder symptoms are much better compared to last year!! It's such a blessing to have those normal days where we can feel in control of our life :). I don't really have heart related symptoms, except when we increase the dose of bifido, then it lasts a few days and goes away. Usually i'll also feel more anxious or worried, or other chest related emotions stronger. I hope you can see improvement on those soon as well with Matia's help. I am especially excited to hear that your immune system is getting stronger, i am dealing with that as well and mainly problem at work, as everytime a coworker gets sick, i get sick with them. It was either my die off or weak immune i am not sure still, but i thought it was so funny you said: "vs in the past when I caught every single bug within a 10 foot radius" really made me laugh. I used to complain to Matia about it the very same way and she thought I was in this vicious cycle and took me a while to get out of it. One thing that i think has helped me is walking out during my lunch break for 10-15 minutes everyday, especially making a point of getting some sun. The sun has D vitamin and it's supposed to be good for strengthening our immune system and if we get sick, help us recover faster. Anyways, hoping that we can all leave this vulnerable state soon.
Detoxing - STILL - 18 months later
Hi Katie,
I seem to be in the 2nd round of heavy detox - floaters again - bright orange discharge after vaginal discomfort - which hadn't bothered me for six months - itchy private parts - both front and back - and bumps, once again - all over skin - burning tongue, dry eyes, just want to sleep for a year - if not tired - hate the world. As for the heart thing - only irregular beats here and there. It appears you're the lucky one on that symptom :)Oh, and weak legs. I think, like you, I'm sick and tired of being sick and tired. The thing is, the list of improvements is HUGE - Dr. B told me on Friday that I will get there....
Take Care - Hang in there -
Hi Ladies, After 6 days of
Hi Ladies,
After 6 days of combating whatever virus was planning to invade my body, I won and my heart has calmed down with it. Very interesting though... in the beginning of treatment I experienced intense tooth pain (in once specific tooth;) and although it did not come back with the same intensity, the tooth pain did come back while fighting the virus. So... my heart went nuts and so did my tooth....to fight a cold... but I knew that when my tooth pain began subsiding, my heart rate would follow a day or two after. It feels a little like being part of a side show when I share conversations about what is going on with me..lol.
Selichan- Thanks for the companionship regarding the "within 10 feet". I must say... even before IC, I have always gotten sick easily. Not intensely, but I caught lots of bugs and colds ... even as a kid. AND I am a FIRM believer in your sunlight theory. A little sun makes all the difference in the world... and, for me... walking;) Hope you are enjoying a good patch!
Denise- Hi! I have thinking about you! Sounds like if we got together we would be a really great pair! I couldn't breathe and you itch and hate the world! HA! I do appreciate you sharing this with me.... my rounds of detox issues are getting further apart, but when one hits, it reminds me of how crappy I felt a year ago. 18 months in is quite an accomplishment....staying on the diet, watching products etc.... when I think about how much we all do to make our life the "project" that it has become, I believe a congratulations is in order. This disease is a lot of freakin work;)
Katiie
Katie- Hi! That is all very
Katie- Hi! That is all very interesting if not exactly fun!
I've had this muscle pain detox since last June and it amazes me. In some ways it is causing me more issues than the bladder. I asked dr B how I could have so much crap coming out of me if i didn't feel as sick as so many. I won't get this totally right, but she said that it isn't the amount of stuff that makes you feel sick it is the relative amount. SO some people may FEEL a lot worse with less bacteria/toxin whatever and therefore have a shorter detox/healing time. I guess i am one of those who managed to be really high functioning for years with a ticking time bomb inside of me.
Anyway- I am glad your body prevailed over the virus!
Deir, thanks for sharing
this info. I'd kind of wondering why it's taking me so long to heal - even though my bladder doesn't seem to be as bad as so many here - just other crazy extremely insane mental issues. I too have been really high functioning with the ticking time bomb.
Hannging in there with you !
Katie- also wanted to add-
Katie- also wanted to add- one of my mental issues withthis is worrying that it has branched out into somehting worse- like I will never not have muscle pain again even if my bladder feels better. it is scary
That thought crosses my mind,
That thought crosses my mind, but I know vitamin D works for me. The question I have is will I be able to get off vitamin D and not have muscle pain.