Forums:
Last night I tried to ask where everyone was from in the meeting but it got a little confusing so I thought I would start this thread so that we can all have a better idea of who we are talking to :)
SO I am Nicole I am beginging my 9th month and I am from Bradenton Florida.
Hi from Texas!
Nicole, I am from Dallas, Texas and am starting treatment in May along with my daughter. Sharon
Another hello from Texas!
Hi Nicole, I'm from Austin, Texas and I'm starting my 5th month of treatment. My daughter is also in treatment. We started together. Again, it was great chatting with you after the meeting.Tammy
I am in Austin, TX too!
Hi Tammy,
I am in Austin, TX as well. I have not started the treatment yet. I just got the website today and sent in an e-mail to Matia. I am desperate, and in so much pain. I have been doing accupuncture now for 6 weeks, and taking herbs. I got the info for this site from a physical therapist whos sister has IC and is now doing much better. I am wondering, is this treatment expensive? Does ins cover it? Is it hard to get an appt with Matia? I am so eager!!! My family is going to have a fund raiser so I can fly to California to go and talk to Matia. I want to start this program asap. I hope and pray that I get help soon as I am losing my mind and am so sad. I am married, have a 8 yr old little girl, and have now had IC going on 2 years. Each day is hard, and I cry pretty much each and every day. Any hope wold be great to hear from any of ya'll.
aslwas
Hi aslwas, you have come to the right place to get help. No, it's not hard to get an appointment with Matia. I don't know how the cost compares to seeing an urologist and getting the orthodox drugs (I live in UK which has a different healthcare system). Matia is the only alternative IC specialist, that I know of anyway, and she has had over 12 yrs experience of treating people with this illness so you can be assured that she is the best person to treat you. She is very caring and supportive. The best thing is to start the List 1 diet now. I've had IC for about the same amount of time as you and have now been in treatment nearly 6 months and have made a lot of progress, pain and other symptoms have reduced to a much more manageable level. Have u read the success stories? They are really inspiring and give so much hope. Hope is so important.
Hi Jane, thank you so much for your reply!
It is great to hear that Matia has so much experience! I want to go and see her so bad. I need to gather $$$ first for the plane ride, car rental, hotel, and drs. visit. My hubbie and I are going to have a barbeque/fundraiser within the next month or so. I am also going to refinance my house so I do not have to pay for a month of mortgage. I know this sounds desperate, but the truth is that I am desperate. You know though, through all of this sadness, for some reason I still have hope. I will be damned if I ever give up hope. When I have a goal I tend to conquer it. My short term goal at this point it to make an appt to see Matia. My long term goal of course is to heal. I know I can, and I am willing to give 110% to the effort! Have a great rest of the day and thank you so much for responding. :) I am going to read about the List 1 diet now. Do people tend to lose weight on this sort of eating regimen? I know that losing weight at this point should not be a goal, but to eat that way, knowing that I will lose weight and get healthy, will certainly be an added bonus to stick to plan.
Hi from Austin
Your PT did you a great deed in giving you Matia's name. I have been in treatment since Nov 08 and am doing well. I can answer any questions. I also have an 8 year old daughter. Email me and I'll give you my phone#. Hang in there. You'll get better!!!! I see you are online. I just emailed you my #. Tammy
wherabouts
My name is Mary- I live in Columbia, SC and I am in my 10 month of treatment! Whooo!
Hi from Canada
I am from Vancouver Island, British Columbia Canada and have been in treatment for 8 months.I have not been able to take part in the support meetings and sure hope to join you there next month.So glad you're all there...Lois
Hope to hear from you next month.Isthem
Is the meeting time too late for you? I thought you were on the same time frame as CA. I just dial up on my phone. It's the easiest way for me. I'm not computer savy at all. This last time some of us stayed on after the meeting and had a chat. It was great fun for me. Hope to hear you there next month. Tammy
support meeting
Thanks for the encouragement Tammy.. It's the way life has been going with visitors and some travel that have kept me from the meetings. Although, I must say I have been worried about the techno end. You make it sound easy enough for me and I sure hope for the next one...Lois
Hi
My name is Carol and I have been in treatment for 10 months. I live in the San Francisco bay area in Northern California.
im from ohio and have been in
im from ohio and have been in treatment a little over 2 months
Hi from UK
I live in England and have been in treatment for 5 months. It was lovely to chat to those on the line after the meeting.
I'm Lisa, in treatment 4
I'm Lisa, in treatment 4 months, live in Los Angeles.
Hi, My name is Estela and I
Hi, My name is Estela and I am from Edinburg, Texas. I have been in treatment for 14 months.
hi from California!
Hi, I'm Carol from Santa Cruz, CA.
Oh this is so cool I am so
Oh this is so cool I am so happy to meet all of you. It makes the board and chat more personal. :) I had such a great time talking to everyone during and after the meeting. I look forward to the next one.
Much love
Nicole
Hello
Been meaning to join the phone calls... I will some day... I am from San Diego, CA...I like seeing where you are all from!
I am Natasha, and I am from
I am Natasha, and I am from New York
How do I contact Matia?
Hi there everyone,
Sorry to change the subject. I just have a quick question. I went to "Contact" here on the website, and submitted a form that had my name, my e-mail addy, and I wrote a short synopsis of my story. I am wondering, when will they call me? Is there a contact # that I can call them at? Thank ya'll in advance for any words of wisdom and all of your sweet e-mails! :)
contact
What you do is call this number to make an appointment. 310-231-3300.Raquel or Lynn will help you set things up- i forget what the process is but there is one- they are both awesome and can answer quite a few questions. Mary
contact
If you click BomaMed Acupuncture and Herbal Medicine on the left of your screen there is contact info there. The phone # is 310 231 3300. This weekend we have a support goup meeting that is for locals in L.A and also for those of us that are long distance we join in over the phone. If you wish to participate you have to email Matia and she will give you the info so that you can join in. It is very helpful and always full of good info.
Thank ya'll so much!
Ya'll are awesome! I can already tell this is a group I want to be part of.
Support Group - This Saturday
Welcome Asiwas. My name is Liz from Los Angeles, have been going to Matia for 2 months. Please join us for the support group on Saturday. Before I saw Matia, I attended the support group in February. It gave me such hope. I have not missed one since. I love that your hubbie is helping you with a barbeque/fundraiser. My boyfriend also supports me in my recovery journey. It really makes a difference. You will get better, if you do EVERYTHING Matia says. I am between list 1 and 2 and feel better already. LIZ
New Yorker
Hi,My name is Beth and I am from Rockland County, NY. I am a newbie to the site and I have not had any treatment with Matia. I am in a program with a local acupuncurist and hoping he can help. It is my first step since getting diagnosed in March.
Hello to everyone
I'm Melanie and I live in Freeport, Bahamas. I have only been in treatment since April 2009. I have had bad IC symptoms for about a year, but think it was there long before that. I'm sorry I missed the last support meeting, but it was my Mother's birthday dinner as we are 3 hours ahead. I hope to join next months meeting if I can. This site is so wonderful, it gives me hope when I am having a bad symptom day.EHugs..Melanie
My name is Sam and I just saw
My name is Sam and I just saw Matia last week and started treatment. I am a pilot and live currently in St. Louis but am getting ready to move to Long Island, NY (which is home) in another week. I woke up with IC 15 months ago and was diagnosed a year ago now. After doing all the standard "Western" treatment, which did indeed help me by the way, I decided to follow my gut, which has always been with alternative medicine (well, integrative really) and try to heal myself all the way. Because of the medications I was on I could not work for over a year now and just didn't feel fully satisfied with the regimen I was on. I was about 80-90% better, but felt there were deeper issues I needed to work on so it didn't come back. I don't acept chronic illness without a huge fight. I've had a crazy year-long journey and am looking forwrd to getting back to living and stop focusing on my bladder 24/7. In the meantime I'm working on spreading the word about IC and trying to plead my case to some contacts I have at ABC and Oprah. Fingers crossed!
Thanks for all the positive feedback here! I will admit this site scared me at first when I read about the die off symptoms; I put off seeing Matia for a few months. I could kick myself now, but it's never to late to start healing! So far so good after one week, I do fear the upcoming weeks and months as far as symptoms go, but I know I can come here and get my questions answered and find support.
I'm Liz from Boulder,
I'm Liz from Boulder, Colorado. I'm 25 and have had a rough time believing I have IC and not just a UTI (my urethra burns, but no other symptoms)- despite being diagnosed by the best urologist in the state. My goals are to have awesome sex again and to enjoy peeing :)! I'd like to put together a support group in the state, so hit me up if you're interested in more details about that.
p.s. I think it's fantastic that you're a pilot flygirl- it's one of my dream careers and I'm planning on taking flying lessons this summer/fall!
Hello Everyone
My name is Tammera and I live in central california. I am grateful for my 3 hour drive down to l.a. after reading where some of you are from. We are so lucky that Matia can utilize phone consults to treat us.