So scared

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I am so scared I don't know what to do. I have researched the Internet, been to numerous doctors, and this is one of the only sites that gives me hope - hope that someone knows something about this disease and could possibly help me overcome it rather than only offer invasive treatments.

I put myself on this diet and have been getting better as a result of it. I also bought just about every IC book written by people who have cured themselves and read them, hoping to try some alternative approaches to medicine, but I don't what to do. I've been experimenting with herbal teas like some of the writers mentioned, but it seems like one of them or something lately has made me worse than I was.

I am still working full-time, and it is so hard. I was off three months and came back. I have told my employers that I am ill, but I did not tell them I have IC. I have not been officially diagnosed with IC and do not want to have a cystoscopy and other invasive procedures.

I live three hours away from my family, and it is so hard for me to go to work and concentrate when all I think about is what is happening to my body or what will happen to it. It consumes my everyt thought, and I am almost suicidal because of it. I called my family tonight to tell them this, begging for help, but they don't really seem to understand and think that I am overreacting. My sister wants to have me put in a mental facility, and I don't think it's a bad idea, but if so, my main concern is what they would offer me to eat and how it would affect me.

I'm in a program now for anxiety and was in one for three months, but it is not helping me, mainly because I don't feel that anybody really understands what I'm going through.

I feel so alone and scared. I'm not sure how much longer I can go on being this terrified.

I wanted to come to Los Angeles, but I know I'm not well enough to travel there by myself. I don't know where I'd stay, how much the hotel would be, and since I've been out of work a while, I don't have enough money to spend on an expensive plane ticket. I tried to see if any airlines might offer disounts to sick people, but I couldn't find that option.

I don't understand why this is happening to me. I need to keep my job. I need insurance and money. I am single and alone. I don't know what to do.

blondy's picture
blondy

Me, I am so sorry to hear what you have to say. I was in your shoes a while ago. I still deal with my share of issues. The first hope I saw after starting the diet. That was a real and dramatic improvement over period of time (about two months). Perhaps you can strictly continue on the diet? That will get you a little better. I will warn you that if I were you I would not add ANYTHING to it. I experimented with this and that, some things worked to some degree, but some didn't. You need to realize this is a PROCESS. Things will not happen overnight. There is no magical pill or herb you can take. 
You will have to work on removing toxins from your body. If any of your relationships are toxic, you will have to protect yourself from those, too. Why don't you ask your relatives to read information about IC online? May be that will help to develop some empathy.
As to the psychiatric facility, it may be helpful as a measure of last resort to save someone's life. They won't fix your problems in the long run. 
Best to you,
Blondy
 

fahlmank's picture
fahlmank

Me, I completely understand how scared you are. When I need to solve a problem, I tend to research each aspect of it until I understand all my options. Unfortunately, this included many articles and websites that view IC as an incurable, painful, life-long illness. There are lots of us here to tell you that it is possible to heal from IC. 
You are not crazy. You are scared and alone. I completely agree with Blondy that one important step towards health is recognizing what is unhealthy in your life... that may include relationships that are not supportive of what you need to do. That is why Dr.B created this forum.. for us to be able to help and share information with each other. 
I could not come out to LA right away either. So, I started the diet four months before I saw Dr.B... saved up and then made the trip. I figured that even though I had to put part of it on a credit card, my life was getting to the point where I couldn't afford not to make the trip.
You are not alone,
Katie

deir's picture
deir

Ditto to what Blondy and katie said. You need to know you are NOT ALONE! We are here for you and that can be an amazing thing. LIke Katie- I scared myself so much reading mainstream sites. I really wish I never had. I have no idea where  you are financially so please pardon me if I offend you- I recommend Dave Ramsey's book "Total Money Makeover" It is mostly about overcoming debt but it helped me save in the months before I cam down with IC. Thank God I did- I have been able to pay for everything without debt but if I hadn't I woldn't even flinch about putting it on a credit card. But not before you cut ALL EXTRAS- cable, cell phone plan, anything, sell stuff on craig's list, stop contributing to retirement,  buy clothes at thrift stores or whatever you can do. You don't need to stay overnight. Many people fly in have their appt and fly out again. I am definitely lucky in that I h ave a stable financial life but thee was a time when I didn't. I am a dancer and in my early 20's a dr misdiagnosed me and I ended up seriously injured for a couple years. I had no insurance and mostly lost my career. I understand how horrinle it feels to need money for medical care. But Dr B's treatment is so amazing and do-able. If you can get enough for a flight and a couple hundred extra for herbs- you've started. Cut out the extras for a year (if you have any) and you can pay the monthly 150 plus herbs.
 
Again- I have no idea about your finances and I hope I was a help and not just annoying.
 
Hang in ther- my heart is breaking for you.
 
You are not crazy. This disease has shaken me to the core. I have battled with fear so much. The amazing thing is- you've found this site already and teh diet is helping. You're on your way.

deir's picture
deir

also- I know what you mean about the Psychiatric facility. I can't believe I'm saying this today because I've been having a good spell, but ther have been days when I htoght the same thing. I often said that what I need is an old fashioned European Spa- like from the turn of the century where well to do ladies would go to "take the cure" LOL Sure- that will work with 3 kids.  I have felt like I need to run away from the illness but I can't. We just need to cope with it and stay on this hopeful road to healing.
 
there are stages of grieving with this for sure. Just facing that this is really happening can be daunting enough.

Willow's picture
Willow

Hi there,
My life was (and in some respects still is) on the roller coaster you find yourself on now. I first came down with IC symptoms in March of this year and spiralled into fear, depression and anxiety after reading post after post on the Internet about how IC is a debilitating, incurable disease. I think some of the panic attacks were actually symptoms of our condition, but there's nothing worse than being in pain and not knowing what's going on.  I would repeat to myself over and over, "I'm in the worst of it now because I don't understand what I'm up against.  As I learn more about this condition and how to help myself, it'll get better."  And it did. 
I too bought every Catherine Simone book as well as another other text I could get my hands on about people who managed to recover from IC. I also spoke to people with IC or who formerly had it and learned that recovery is possible. I allowed myself to slow down, rest and not push myself.  I also tried to not blame myself for this happening and love myself all the more through it all.  I'm very lucky to have a supportive family and I asked them to read IC resources so that they understood what I was going through.
I've also already spent thousands of dollars on natural herbs, supplements, naturopathy and Chinese medicine. I don't believe they made me any worse, but I also don't think I got any better.  I believe these other practitioners and techniques have an overall understanding of IC and what needs to happen to heal it, but I realized I needed someone with a PROVEN PROTOCOL to deal with IC, who could instruct and advise as necessary to get me better.
It was only when I started Dr. Brizman's diet a couple months ago that I noticed a huge difference.  Right now, day to day, I'm out of pain, which is MIRACULOUS! After a lot of research into Dr. Brizman and her technique I decided to come see her.  I actually booked my flight last night and am counting down the days to my appointment.
What I'm saying is, I know exactly what you're going through, I know everyone on this forum does. YOU'RE NOT ALONE. Firstly, have hope: we can heal from IC and go on to live healthy, happy lives.  Second, you've found Dr. Brizman: I hear over and over on this board that people wish they had found her years ago. 
In terms of the money, I can only echo what everyone else has said.  Take your time, follow the diet, and come to see her when you can. But the first thing you need to do is take a deep breath, give yourself a break, take a bath and take care of yourself. You'll notice that you'll feel better when you do.  Take it one day at a time and lean on the positive people in your life, including the people on this board, when you need to.  I know I do and will much more once I start treatment.
Sorry for the epic post people. Me, I hope all this has helped you. Recovering from IC is a journey and you're at the beginning. It will get easier.

calieve's picture
calieve

I understand how you feel. No one understands IC and they don't believe how hard it is on the body or how depressing & frustrating it is to be in pain everyday. No matter how much you try to explain it to people they will never understand the way you feel.
 
I did the same thing as you, I bought all these books on how to heal myself with teas, herbs, and alkalizing. None of them worked.
 
The best thing that I did was start diet list 1, fill out the patient evaluation form online, then I got off all the western medicine I was taking. Then I made my appt with Dr. B to start her protocol. 
 
I know it's hard because it's a lot of money but it's worth it. If you can, just put it on a credit card, and maybe ask a family member to go with you to the appointment.
 
You will be surprised how much Dr. B will understand you. Keep reading posts on this website, it really helped me get through everything I was going through.
 
For the hotel, there is a Holiday Inn only a few blocks from Dr.B's office and I think they give a special rate to Dr.B's patients. If you call Dr.B's office and let them know you are planning a trip over there, I'm sure they will help you with whatever questions you have.
 
Good luck, I hope you can make the trip so you can start getting better.
 
Also, for me chamomile tea has always helped me calm down my pain. Everyone is different though, but it might be worth a try.

Veronica Solano's picture
Veronica Solano

Hi Me, i really wish i could talk to you. Can you send me an email with your phone number??? I have been where you are today, and after almost 3 years with Matia i am in a better place. i wish i had the oportunity you have now to ask and share, i did not have that and took me a lot of time to find Matia. i wish we can talk a tell you what i have learned. God bless
 

Christine222's picture
Christine222

Hi Me, I am so sorry you are feeling this way, please know that if you do see Matia, it will get better! I know how scared you are right now, we have ALL  been there. When I got this last Feb. it hit me like a ton of bricks. One min. I was fine then bam! I thought I had my first uti ever, I stupidly took antibiotics we had in the house and I didn't get better. I had insomnia, anxiety, I lost over 40 lbs. It was awful. I was also living near no family, I had no friends in the area and my husband had just taken a job in another state so I was all alone with my daughter. It was the worst time of my life. I knew there had to be a better way to deal with this then taking tons of medications and pumping my bladder full of chemicals. When I  found this site I knoew I had found my answer. Now I just had to figure out how to get to LA. It really wasn't as hard as I thought. After I filled out the questionaire I was contacted my someone in the office. I found out times I could come for an appt. Then I looked at flights. I found one out of GA for $259 round trip no stops. I was able to have my mom come with me. We spent one night in a hotel near the airport. That was $100, I could have stayed someplace cheaper if I looked. I rented a car for one day and that was less then $30. The initial appt. is $350 for 1 1/2 hrs. I brought my GPS, the office is about 20 min north of the airport. This was at the end of April. I started on the herbs first week of May. I am doing soooo much better. Most days now I feel almost normal. I am on list 3 and I can start trying things on List 4 this week. I have not regretted going to see Matia for one min.

Hopeful's picture
Hopeful

Me, my thoughts and prayers are with you right now. I promise that there ARE people who know and understand what you are feeling. I think a lot of us, I know I have, felt like they are going to go crazy if something doesn't change, or relief in some form doesn't come.
I liked the advice above to just take a bath, or do something that can relax you a bit, and take care of yourself. This is a choice, and choose to treat yourself with tender care. But also understand, if you are having a really hard time and feel like hurting yourself, you need to talk to someone!!! There is no shame in that, only strength in reaching out for help. 
Your already making progress by finding this site, starting the diet and researching and thinking on how you can save to go see Matia. I strongly encourage you like the others to not take ANYTHING. Just do the diet until you can see Matia. Be VERY careful what you put on your skin. Don't use anything you don't know exactly what is in it OK?
Try and rest your mind, it is going to be Ok. Take one hour at a time if you can. It's ok to be scared, but it is what you do with that feeling that matters. Let it bring you into a place of comfort that you can survive, you can take care of yourself, and reach out and receive hope and encouragement from others,  hour by hour and look forward to better days.

SarahC's picture
SarahC

Hi Me, I know someone on the board offered to have people to stay when they have their appts, to help with the cost - maybe you could look into that? If you book well in advance that would help with the cost of the flights. Do you have family who could help? Ask for money for birthday/christmas?
I do second what everyone's said. I'm so glad I went to see Matia. I'm five months into treatment and have seen very good improvements - have hours and days that are symptom free, and even my bad days are far more manageable. A lot of the weird feelings - coldness over my pubic bone, external pain and itching - have dissipated or disappeared. My frequency is now excellent (3/4 times a day) I sleep through 50% of the time, urgency is faint when it's there. At the minute I have some ithcing/irritation in my vagina, but it's very bearable.. This time last year, when everything started, I felt exactly the same as you. My son was 2, and I didn't think I was capable of being a mother to him. I had a full-time job that I loved, and thought I'd have to resign. A year later, I'm definitely sick of still having symptoms, and the restricted diet (am edging v cautiously onto list three), but I look after my son no problem, am working full time and doing well, and am able (on the good days!) to forget about IC and enjoy my life again. Looking forward to the point when that's the case 100% of the time. There is hope, i promise. Keep talking.

junie's picture
junie

Hi ME.  I totally UNDERSTAND what you are going through.  Noone will ever understand the pain we feel every moment. People are not as compassionate because we "look" fine....just because the pain can't be seen, it doesn't mean it's not there!  
This year, IC robbed my life.  I used to be a happy social person....now, I stay home.  I'm unable to enjoy anything because I'm in a constant pain.  Whenever I have to leave my house, I feel anxious because I'm not close to the toilet. Like Sarah C, I have a two yr old and I'm always battling with myself... I want to give my 100% self in being a mommy to my daughter and just because I'm unable to, I find myself feeling depressed. At first, I kept my IC a secret because I was a bit shy and besides I didn't want people to feel sorry for me, but over the summer I told myself I need to get the word out, this incurable disease deserves recognition.  I have told my family, friends and coworkers,  and this was their first time hearing it. I wasn't surprised.  Anyway, I just wanted to tell you that there's HOPE....really!  I was so DEPRESSED and I literally cried nonstop one whole day thinking and saying why me.  I just couldn't be there's no cure...so I have to live like this for the rest of my life, what!! I broke down.  Anyway, I just wanted to tell you that I'm one of the newest Dr. B's patient.  I went to see her in Sept 30 and started my herbs and diet Oct. 1st.  It was last Weds. when I had an hour and half of minimal pain. My pain level is usually 8 and down to 3 right after I pee. Sometimes I have to use the wall to get myself around.  It was awful, I wanted to commit suicide in July because the pain was unbearable, it was a constant 8 or even a 10.  I hope I will never have that kind of month.  Anyway, on Thurs., I had about an hour of minimal pain and couple of hrs on Sunday.  I used to have urgency, but not so much now.  We can heal from this!  
I PROMISE you....things will get better.
Sending you hugs!  :o) 

deir's picture
deir

Junie- Oh I am so sorry you have suffered so much. I am so glad that you are seeing even those small windows into your future of being painfree and healthy!
I have a 19 monthold , 6 and 8 yr old. I struggle with feeling guilty too but I try not waste too much time on that useless emotion. I am sure you are a wonderful loving mom and you are taking such a  great bold step to be so much stronger as your daughter grows.
 
HJow kind of you to encourage "ME"
 
Onward and upward!!!!!

SarahC's picture
SarahC

Junie, that's so brilliant. I remember your post from the original vent/hope thread, and my heart went out to you. It's so exciting that you've had some good moments. Keep on going; I've no doubt they'll become more frequent and longer. Let us know how you're getting on.
 
Me - hope you're still reading. We're thinking of you.

calieve's picture
calieve

ME: 
Here is the link about the hotel near Dr. B's office:
 
http://icama.org/blog/mbrizman/2010/01/29/hotel-california
 
Actually, a hotel IN California, RIGHT around the corner-almost-from our office that we often will refer our out of town patients to has extended ICAMA patients a special rate of $99.00 per night.
 Holiday Inn Express West Los Angeles11250 Santa Monica Blvd.Los Angeles, California 310-478-1400 800-308-5432Tell them you are one of BOMAMED/ICAMA patients
 Their normal rate is $189.00 per night.
We will be putting up an advertising banner for them so that people can find them easily. We are VERY GRATEFUL to them for doing this for our patients.
This year we have a big goal-to try to make treatment easier and more doable. I am determined to set the foundation for my non profit rehabilitation ICAMA "home".
But, for the first new month of this new year and new decade, this was a very good news for today, thank you Holiday Inn! 

deir's picture
deir

I thought it was a nice hotel too. But of course I am wishing I was in LA right now since we just got a lot of SNOW in PHilly! Unbelieveable