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Hi everyone- I have been doing really well (more on that later when I feel more confidant!) but anyway the past few days I have this "hot patch" on my left hamstring!! I first felt it the other day when I was sitting with my son and I htought he has his hand under my leg making me feel heat but it has been coming and going at all kinds of random times. It feels like a heating pad on the back top of my left thigh. I have had a bad cold followed by a stomach virus this week (also weird) which is prob not related
Probably just another random weird IC thing but I was wondering if anyone had ever experienced this
Hey Deir,
Hey Deir,
SO pleased to hear you say you have been feeling well! It is about time for the this darn disease to turn a corner .....right? ;) Yes, I have has the hot patch feeling. It is really a strange sensation and then mine began radiating heat, then I get a sort of rush....not uncomfortable though. Also interesting....... teaching school all year I have not used one sick day this year until two weeks ago when I was hit by a tough cold followed by a stomach bug. Hmmmm.....perhaps not the coincidence I though!
i want to hear more of the " good " you are experiencing! Bladder pain died down?
I started chelation for the arsenic three days ago.....so far, so good;)
Katie
Deir, so glad to hear you
Deir, so glad to hear you have been feeling better!!! I hope it lasts! Katie how were you exposed to arsnic?
Hey Christine, Doctors here
Hey Christine, Doctors here in Cleveland think that it is from 13 years of being gluten free and eating 5-7 servings of rice a day. Arsenic is found in rice....Dr M has posted about it on this site before, but those "small amounts" accumulate over time and voila..... High levels of arsenic are in me. I have had all other sources....water and soil tested. Good news?! I can chelate arsenic fairly easily. I will keep you updated as the situation progresses. Hope you are still feeling well,
Katie
Hi - I too have had the hot
Hi - I too have had the hot patch thing - it's been in different spots on my leg. I've also had weird bruises pop up around my knee after feeling stabbing pain there......
I am so happy that you're feeling better - it is so good to hear.
Yay! Deir, I've been
Yay! Deir, I've been wondering how you were - hadn't seen you for a while - normally a good thing!!
Yay! Deir, I've been
Yay! Deir, I've been wondering how you were - hadn't seen you for a while - normally a good thing!!
Deirdre, I'm so glad you're
Deirdre, I'm so glad you're feeling better lately! I am celebrating with you! Love you, girl!
Lisa
Wow this is great to hear! I
Wow this is great to hear! I don't need to tell you how hard you have worked and desserve this so much.
I like the extremity symptom. This is in keeping with her dissertation. For the readers that dont know (as I know you do) pathogens move away from the organs as the deep healing is occurring in your body. I think it is a VERY good sign. Bring on the wierd extremity stuff!! Back of left thigh is lymph + bladder meridian. LOVE IT! xo
If we don't excel at health, the only other option is disease.
My dearest DEIR - YAY!!!! Go
My dearest DEIR - YAY!!!! Go girl! So happy to hear the great news!
Yes I've had the heating pad thing too - very odd - but it's all gravy baby :)
Thanks for the good wishes
Thanks for the good wishes everyone!!
I still feel very nervous (and today bladder is a little more shaky!) so I am not going to go on and on but the truth is, I have been doing much better overall. Since Dr B added in Vit D a few months ago, I have gradually been doing better. I had a terrible flare in March that I wrote about but I think that was a blip and might not have happened if I hadn't been attempting to get away for the weekend- the stress was too much for me.
This is the longest span of good/decent days that I have had since last May!! Starting then, I feel like I actually got WORSE for a long long while with bad flares many times a week sometimes every night. That was the 2 year anniversary of treatment for me so now I am coming up on 3 years. I am not out of the woods but I finally feel like I can try to add a new food and actually TELL whether it is bothering me. I have been so up and down from the very start that it has been impossible to tell. I was very very close to giving up recently as some of you know but it seems like I may have finally taken a better turn. I am not confidant yet after all this time, but there is a little bit of a brighter spark of hope in there.
Thanks everyone.
Deir, I too have had a good
Deir, I too have had a good turn since adding vitamin D. I think it is not only the D, but the fact that your body can tolerate and now likes the D. For me I could not tolerate the D at all early in treatment. To me this means your body did hard work to repair the gut and prepare it to welcome the D.
continued healing!
If we don't excel at health, the only other option is disease.
I also found it helpful to
I also found it helpful to keep track of my cycle. After I added D i still have icky day on Cycle day 7, and maybe one other time before ovulation and then near my period. It helps me to know approximately where I am in my cycle.
If we don't excel at health, the only other option is disease.
Deir
Deir
HOORAY!!! I'm so happy to hear you are stringing some good days together. You deserve every minute of it. Stay the strong & powerfuL woman that you are... Much love
Amy
Keep going Deir! You will
Keep going Deir! You will gain the confidence as time goes on! Your prayers are being answered! So happy for you!!!
Ugh- I had a bad flare last
Ugh- I had a bad flare last night. This is so tough. I know I was doing better but as soon as I get this awful nighttime stuff, it is so hard to stay focused on positive anymore. I am hoping it is just ovualation.
I am sure there are people out there who still had flares after starting to get well- right? I just have been through so many times where I thought "this is it, I have finally turned a corner" Only to have it followed by months of bad again. It makes me feel like this up and down will go on forever for me.
Teh good news i, I was becoming so much more calm and content recently so i know that my anxiety etc is directly tied tot he physical symptoms and not a separate issue to deal with.
love to you all and thasnks for you support!!!!!
Hi Deir, I'm so glad you have
Hi Deir, I'm so glad you have been doing better lately, even with the bad flare of last night. Can relate to the ups and downs - I use to have a couple (3, 4,...) of good days followed by more or less the same amount of bad days. Neither of them is very extreme - good means low to very low symptoms (not symptom-free but sometimes almost), bad means stronger symptoms, sometimes it could be called a flare, but not always. I always say to myself I should start a diary - I'd do it in an Excel file, probably - , so that after some months it gets more evident whether there is a trend / tendency of progressing visible, or not. Until now I've been too lazy to start it though. This weekend I begin my Easter holidays, so there is no excuse LOL. I really really hope your good (or better) days were a tendency and will continue more and more often, and each time longer and longer. I'm also very glad to hear about your improvement of mood, that means lot! Big hugs.
Thanks Nika- I keot a journal
Thanks Nika- I keot a journal every day up unitl a few months ago. I think it is extremely helpful. I only stopped because I needed to change something because I felt liek it wasn't telling me anythign new anymore and only keepping me focused on symptoms- as if the symptoms themselves don't keep you focused enough. UGhj
Still feeling like crap today and Gosh, this stinks. I was starting to get used to feeling relatively good and being able to just go about my day.
So frustrated. I hope this passes soon. I was nervous about posting somehting positive as if I could jinx myself but I know that isn't how it works.
Last appointment with Dr, I asked her how do some people seem to deal with the emotional parts of this better and she said- most struggle- it is a crazy making illness. That makes me feel better, liek I am doing everything I can and the rest is out of my control.
Deir, even tho I am doing
Deir, even tho I am doing much better I flare AT NIGHT on cycle day 7 and at least one other time before/during ovulation.
If we don't excel at health, the only other option is disease.
Thanks Mimi- I hope that is
Thanks Mimi- I hope that is what is up here although I have never had any good discernible patterns in this whole freaking 3 years. Feeling like I am never going to get off this rollercoaster. Last month I started gettign worse cycle day 5, flared on 8 and 9 at least and then started to get a little better. Today is cycle day 12 so that isn't that same pattern here. I wish I could depend on something even if it was that I knew I would be bad on certain days.
Yes it has not been an exact
Yes it has not been an exact pattern for me. More that if I have a lot of cervical fluid and feel a bit of a tingle vaginally (from the change in vag fluids around ovulation) then I am not near as suprised when I have a bad few hours here and there. Also, vit. D is a cleanser. I don't know what else you are on, but I am on JP AND vit D and some other things, so Dr. B said around ovulation and period I would feel more icky because she is pushing me more, but I am glad she can push me and we don't need to change the protocol, if that makes any sense?
If we don't excel at health, the only other option is disease.
LOL well I should say I don't
LOL well I should say I don't really flare but have more frequency and feel more uncomfortable after I empty my bladder at those times but i can tie it more to the days leading up to ovulation
If we don't excel at health, the only other option is disease.
Hi Deir!! So happy to hear
Hi Deir!! So happy to hear you have been feeling better :) you deserve it! I also was put on vitd about 3wks ago and have felt the best i have ever felt during treatment. apparently, my body loves JP and vitd. I too am leary about talking about my progress because i feel in an instant it can change...then i get discouraged. Hope you comtinue to do well xoxo
Thanks Stargazer.
Thanks Stargazer. Unfortunately, I am back to not well. Ugh. I am hoping that that good spell wasn't a fluke and I get back to a better level soon.