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soemtimes i feel like I am the only one on here with terrible burning and I don't want to write about it to discorage people. I know i am one of the difficult cases. I am so sick of being up in pain all the time seeing the sun rise every morning. It's been 9 months and now i start my 10th month i read about all these patients comming in must not be anywhere near how i am because everyone seems to get better so much faster then i am. I am so alone here i have lost all my friends but my boyfriend and not leaving the house has made us both very deperessed. I can't even try to get out the way i feel. When i go on my walks they are so short i force myself because i need the fresh air and cirulation. I need to see people for my mental well being. Every morning though i can't stand the pain. I just eventually fall asleep from it but never deep quality sleep. I know this program works because i have been out of pain before but this time seems to be much harder for me and I regret leaving LA every day of my life now. I think how different things would have been if I just wouldn't have left. I really need a break through here I mean I could deal with this level of pain a lot easier if I could sleep. It hurts so bad it is radiating down my legs and my feet my whole pelivs is locked up all my vaginal tissues are inflamed my urethra is on fire and i just can't stand it. I wake up like this every day and then after a few hrs the burning of my urethra and vagina goes down enough to cope with the day and then as soon as night time comes it spikes back up again.
So i wonder who else is like this and who of you took a long time to get better because i need some hope here. I need someone to relate to because i don't feel like i can relate to anyones bladder pain. It's hardly talked about. There are die off symptoms but it seems to be it. I wonder how can i be the only one? I know there is no way that is true so please i need some support here.
Nicole I can relate to you.
Nicole I can relate to you. I too feel like I need to hear from someone who felt the same way and did get better. I have been having difficulty in the past couple of months with the burning. For me too it picks up in the night to disturb my sleep na through the morning. The afternoon and evening are better. This is a vicious cycle. I too could deal with this if I could just get a proper nights sleep especially when I am trying to keep my job that I have had to reduce to part time for the time being. I keep hoping that I can get back to full time but no such luck yet. I have got better in so many ways in the past 11 months but the burning and getting up at night have stopped me from progressing. So frustrating because overall I feel healthier. This morning I got out of bed after a rough night of sleep and all of a sudden was drenched in sweat and felt so close to throwing up. I just finished with clients in my office and in so much pain from the burning because I could not go to the bathroom. I emailed Matia this morning wondering if I am just not going to get better and she said it will be fine. It is positive Nicole that you did experience less pain before.I am sorry this is probably not what you are looking for as I am not that person that has been there and got passed it. I hope that we do hear from some of those people because I sure could use it too.
Nicole - Yes - I can relate.
Nicole - Yes - I can relate. I try not to post too often about how long I have been in treatment because I don't want to scare people into thinking it's going to take them as long as it has me. I have been with Matia for 4 years and 2 months and I really am so much better. I had the terrible burning you referred to, though mine was in the morning and the evening only, I didn't experience too much in the way of sleep disruption other than getting up to pee during the night. I recently went through a few months of burning again - not even close to how bad it was 4 years ago so I could deal - but when you're having pain like that those fears of not getting better start coming up to the surface again. When you're in pain it is hard to be objective about your overall health. I have been reading your posts over the past few months and I do see that you are getting better! And you are so supportive of everyone else that posts, I really admire you for that. Some of us have much deeper issues that are harder to work out, I think I can trace the start of my health decline back about 20 years before it turned into full blown IC, so I have to remind myself that it might take me a very long time to be completely back in balance. But I am now in a place that is OK health wise and eating wise. It took me a long time to get to where I'm at right now, and I hope that instead of scaring people by talking about how long it's taking me I can instead offer hope that even if it takes a long time and the steps are very slow it will happen. Just keep taking those little steps each day, even if sometimes they feel like you're going backward. Nicole - I can see that you are moving forward, I know you're going to get better. Carol
Nicole
I think because we know others are reading and because alot of new people are showing up- (I was new once too!werid!) we want our posts to be encouraging and reflect progress as a proof to ourselves and others but sometimes the truth is that its a bad day or a bad month or a bad year and we wish to be out of pain so badly it drives us mad. I have often held back on days I wanted to write exactly what you have just shared because I didn't want to discourage anyoone and I foundit embarrasing somehow after sometimes doing well- it hard to face the fact that I was back again having burning. In fact for me my worst symtoms were bladder/vagina pain. anything else was just the icing.I almost got really depressed again when I tried having sex for the first time in 10 months las t weekend but its just not time and that's okay. I'm getting there. take me 1 more year take me 10 years so be it. but the fact remains that it didn't go too well. In generalthe pain has been worse for me in the day actually the worst at about 5 pm. then back down and then again it would creep up at 11:00pm and I would take a shower and try to control the pain with heat. I would be up and up and up until 2-3 in the morning and take a really another hot shower and finally pass out. not getting enough sleep when our immune systems repair themselves is a horrible thing. I am so sorry you are hurting Nicole! Do you think that you have been ill for quite some time? I know I have. somtimes I wonder if I had like heavy metal poisoning at some point? I know someone who got really really sick after helping clean up Katrina sites in New Orleans. They don't know what is even wrong with her and she's pretty much sicker than any of us. she can walk to the mailbox and fix some dinner for herself and then its back to bed. I think I would be pretty scared. but she is slowly improving over a 4 year span and finding those rough patches where she thinks she's better but it comes back. You body is capable of amazing things- including getting well. you will be comforting someone just like you with similair words. I was trying to get better before Matia and the things I did to try and get better actually ended up hurting me but I didn't know! I went through some detox before I got to Matia and I think soemtimes it helped me clean out some things but I still wish I had just seen Matia in 2005 when I found out about her. I had my 4th session with a therapist yesterday. she does psyche K and EFT and is a certified counselor as well. I saw her because I so desperstely needed emotional support and healing - on days that my bladder felt okay or better I felt sooo sad and depressed- like my normal depression with IC pain was magnified and I knew I needed to address the underlying emotional issues of my IC. My lifeforce and energy vibration was really low- but after these sessions I have felt alot better. I got some burning with the sessions that would go away after a few days and then I feel like almost as a synchronistic aspect - in connection with the affirmations I have been tapping on- EFT everyday 2 times a day to help my emotions- I feel really good lately and my pain has tapered off big time. I tap on certain points in a sequence - one of them is " I am so grateful that my IC imbalence has transformed into vibrant health" and I am so grateful that I feel calm and painfree in my whole body specifically feeling good in my bladder, yoni, heart and mind." I have released sooo much stuff- hurt, anger, guilt and sadness and boy is there more to go but I am feeling better and better all the time. On one level I feel a little scared- I've sick so long what am I going to do not being sick? the world is waiting and many many challenges loom ahead.Its quite overwhelming. for so long being sick was although very painful- it allowed me to withdraw from my life because it was very hard to face certain things for me. so I'm not saying that IC all emotionally related or that you are in pain cause you aren't releasing something or some pyschobabble like that I'm just saying that for ME- I feel like I am helping resolve some part of my pain on an emotional foundational level which is affecting either me physically in a positive way or eradicating it with the help of the mind body connection. The tapping EFT puts me in the synchronistic harmony of life to be at a place where my body is receptive to the medicine Matia gave me and encourages it to heal- I release old emotional "stuff" that may have retarded my healing capacity and have positively encouraged my body to release endorphins? not sure how it is working but it seems to be. the pain is horrible! It warps and twists your mind and perception. 2 minutes of pain may as well be 2 years of pain. has your pain gone down at all? since treatment? I remember angela saying that at the month you are at now she was still suffering so much- in alot of pain and had a difficult time for the first 2 years of her treatment. I think she was in treatment for 3 years? no one is beyond being able to get better. should I post up the EFT sequence that I use? or at least the affirmations? EFT might be too strong for some people as it does involve tapping on places where lymph collects- it is an energy exercise and it does involve tapping on certain acupuncture points. also I know there are rules about posting stuff especially stuff that is patented? don't want to be breaking any rules or conflicting any interests. lets just say - if people feel like they want to know more about all that stuff they can email me privately and I'll give them the run down on what has helped me on an emotional/energetic support level. that way its not connected to ICAMA. I am so sorry you are feeling bad Nicole but I have faith that you will get better. your body is trying really hard and doing the best it can. try to get rest however you can even if sleep is alluding you. may your breakthrough come soon. thinking of you- Mary
Thank you Kristy,Honeybee,
Thank you Kristy,Honeybee, and Carole,
I am trying to hold on to the fact that I have gotten out of pain in the past.I too never want to scare anyone off because i know this treatment does work but if we can't be honest here where are we to be getting this out. I think it can make the ones who aren't improving as quickly feel alone and jellous. Writing down my little positve markers helps me more then anything but I have to reach deep down to find them. I am so glad I was able to possibly reach others that may be afraid to speek up too. It is so nice to relate to someone even if your not doing great. I know it's a process and not an easy one but that is why were all here to support eachother. I am so thankful for all your replies.Thank you all for sharing your stories and your support. It gives me strenth to keep going.
As for sex its kind of the last thing on my mind I am just looking for some better days and energy so I can get out. I am sorry your going through that Honeybee I am sure that is very hard. I am lucky to have someone who is very understanding and doesn't put any pressure on me. I DO LOVE SEX don't get me wrong but for me there are more important things in life right now then sex.
I have been ill for a long time since i was a baby. I got my first UTI at 2 years old and that was the begining of my antibotics. I was on them stright till almost 12 yrs old because i got so many of them. THe drs were worried my kidneys were going to fail and they did some tests on me. The appeared to be fine but i do have only one and it is horshew shaped very uncomon.
I also started taking tegretol for epilespy at age 4 till I was 18. This drug is very bad for the liver.
I started my period at a very young age i was 11 and I had a terrible time my dr prescribed me pain killers for it and i later went on the pill by the time I was 13. I also did the depo provera shot when i was in college.
Not to mention when your in college you don't have a healthy life style so put this poor immune system and all these drugs together and before i finished my Junior yr I had IC. THis is the short version but you get the idea of why I am so out of balance. I also had a miscarrige in college.
I don't have any metal fillings and I don't really eat seafood because it gives me flairs. I know I have a lot to uncover the yeast is big one for me. I just don't get how it takes so long to get rid of.
After I wrote this message my Mother came over only to tell me she can't support me any longer and I need to get my spa open it was a blow to the face. I don't know if any of you know but i bought a house just before I started to get really bad with my IC my second time around in treatment my relapse was from a staph infection untreated and a seizure brought on from high stress. I wasn't really in full recovery either and i just started to feel well only a few months so don't get scared by my story.
Anyway I bough this home i am living in now. It's a 1925 house in an artist district. It is a live and work community. I planed to open a day spa it's all finished for the most part i just have a few loose ends to wrap up and lots of legal things the really stressful part. Its hard for me not being able to leave the house too. This disease has robbed me. I am going to have to get a list going and hire someone to finish it. I don't even know where i am going to get the money to hire somone. I lost all my friends so theres no help there.
It is all terrible timming and still having a hard time fixing up my boyfriends home. He takes care of me and I am hardly able to even let him leave to go run erronds much less take care of construction on his house. The last seizure I had really changed my life and has made me in this frightened state i am in. Not to mention my hormones are such a mess. I did a test just before starting back with Matia and I am showing menapausal levels at age 31. It's been 9 months now since I did that test so i just ordered a new one to see how I am comming a long I will know if it is better it's the yeast making me nuts. I have so much head stuff Matia tells me it's going to come out that way because of the history of seizures.
ANyway I wanted to share a little and thank you all for your support sorry for such a log post.
I hope your all having one of your GOOD Days <3
Nicole, my heart goes out to you
I want you to really hear from me and others how much COURAGE you have. Not just for going through this treatment now and all it's affecting, but for what you've had to go through your entire life. I completely get how you would feel totally robbed of your health, like starting from age 2 you were never really given a chance. And having some experience with anxiety/panic attacks, I understand how a seizure (or in my case fainting spells) can create such paralyzing fear, when all you want to do is get out yet you feel powerless! I realize these words don't do anything to alleviate the suffering you're in, but I just want to tell you how incredibly, incredibly brave you are to endure everything you've been through. YOU deserve a medal of courage, my dear. Many people go about their daily lives and have to experience only the equivalent of a hangnail, they just have no idea.
Angela's story and some others' I've heard do give strong evidence that you too will get through this, but of course it's the unknown time factor that's so difficult to handle, and in the meantime it's an absolute bitch to get through, excuse my French. Just the not sleeping alone is so miserable, and you don't deserve to suffer, so I am so sorry you're going through this. I just know once you're better you're going to do something amazing with your compassion, empathy and wisdom, not to make light of all that you've already done while sick!
Also, I esp. applaud your willingness to post about the 'tough' times, to put it mildly. Yes, as one who had very slow-no progress at the beginning, these posts could be very scary and disorienting, but this forum has to be about us being open and vulnerable and supporting each other. And I agree that you've opened the door to many who felt they couldn't speak. (And if anyone has the right to do a "negative post," it's you, as you are always the first to reach out to others and provide information, insight and support.)
Sending you lots of love and healing energy.
Thank you Lisa for your kind
Thank you Lisa for your kind words of support and praise. It is important to stay positive but I also think keeping it real is important. Matia and I are plugging away trying to go at this another angle. I am on the Vit D with my probiotics hoping this is the thing to give my body the push it needs. I have to say this pushing isn't fun but it will be worth it when I can write this off as a big nightmear and go on to teach others about healing and nutrition. I do plan to go to school for Chinese Med when I am out of this hole I am in. I also plan on getting a degree in nutrition. I have started back on my business as of this week.
I haven't been able to write much my Cat is sick with liver cancer so of course he is on herbs and things. He is older so not sure how long he has but it's been time consuming.
Thank you for your support it's so touching to read. I feel like your all like family. Returning your love and healing energy.
Nicole