Thursday, January 30, 2014

Guest Post

Hi!

I made a guest post at the Pelvic Pain- Our Stories blog. Hope you enjoy it.


-Paola

Sunday, January 26, 2014

A bit of bad news, then it got worse...then it got better.

Hi IC pals,

I've got some bad news to share, but I want to let you know that I'm at an incredibly good place right now. So stick with me. Good news to follow...

If you remember, when I last posted, I was pregnant. Unfortunately at the end of October, I had a miscarriage due to an umbilical cord accident. I thought it was related to the subchorionic hemmorage I had (it was a rather large one), but alas it was not meant to be. The umbilical cord was wrapped once around my baby's neck, and she passed in gestation.

It was obviously a pretty traumatic experience for me. The actual birth (as I had to deliver at the hospital since I was starting my 5th month of pregnancy and I opted out of the D&C) was sad but peaceful. It was a very sacred experience for me and my husband to share.

Well, when it was all over, I realized it was not indeed all over.

A week after the miscarriage, I got a bonafied bladder infection (confirmed with urine culture). I then went on a week of the antibiotic macro bid and I thought all would be fine. I know antibiotics are bad, especially for women with IC, but I didn't know what else to do. I did try to 'kick' the infection via herbs but it didn't work. I tried some homeopathic stuff (cantharis), and it helped, but then I didn't know how to use the homeopathic remedies and I messed it up.

A few days after the macro bid I developed a severe, painful, burning itch all over my body. I later learned that I now have dermographia--thanks to the antibiotics, and that this is technically an autoimmune disease. It's closely related to histamine issues, which we all know, IC is also a histamine issue.

I spent the month of December at the Mayo Clinic in AZ hoping to find answers. The itching and burning was extremely painful and horrific. I could barely move my body without it itching. If I actually scratched, I would develop hive-like bumps on the site. Any sort of pressure...sitting on the toilet, getting up from the bed, and putting on socks, would cause the burning itch. I stopped washing my hair and I even stopped brushing it expect for perhaps once a week because a gentle comb through would cause the searing burning itch. Even the cold air outside would make me have a total body fit of itching. It was insanity. I don't mean to be too graphic, but when I would have a bowel movement and clean up afterwards: the mere act of cleaning up would cause an insane amount of itching in the buttocks. I wouldn't wish this experience on my worst enemy.

It was terrible. I was convinced I was developing mastocytosis, a severe and life threatening histamine intolerance/mast cell problem that can manifest with this total body itching + IC. Many people with mastocytosis have IC and they itch all over their bodies. I think this debilitating itching, the miscarriage, and watching my health further unravel was a little too much for me to handle, and I started having panic attacks at night. I would wake up completely drenched in sweat *as in I could take off my shirt, wring it, and see droplets of water fall out.

Of course, to make matters worse, I ended up having an 'incomplete  miscarriage'...this means some tissue was left behind from the birth, so I had to have a D&C after all. Ugh.

So, back to the Mayo Clinic. I spent a month of appointments there, and the end verdict was: I'm incredibly healthy. They ran a BATTERY of tests on me, and they all came back normal and healthy. My hormone levels checked out great. They checked me for all kinds of intestinal issues like Small Intestinal Bacterial Overgrowth, Low Acidity in the stomach, fructose malabsorbtion, and more. They also checked my blood levels, thyroid, adrenals, cholesterol, and they checked me for mastocytosis. I even had a CT scan (no I didn't drink the contrast dye!)  They WANTED to do a lot of other tests on me, like the 24 hour oxalate urine test, but if you follow me and my blog, I had already done those  :).  I did pat myself on the back for being almost as smart as the Mayo doctors and for having many of the tests they WANTED to do for me done ahead of time. :) I was literally asked by 6 different mayo doctors "If I was a Scientist" or a "Professor of Science" because "I knew so much and had done so much already." But unfortunately patting myself on the back would cause me to itch, so I didn't even do that.

By the time my trip to the mayo ended, I was not only in 'incredible health' as far as lab results go, but they said they didn't know how to help me.

One thing they told me was that they were glad I hadn't done any of the invasive bladder procedures, like botox in the bladder, pudendal nerve block, and others. They said that the sickest IC patients that they see have done all of these, and that they recommend not 'getting in line' for such invasive procedures especially when they're new. They told me that less invasive is best. They were also impressed that I had managed my IC so well until now. This is definitely just the opinion of a few of the Mayo doctors I saw, but I felt very validated. I'm so glad I have turned so many of these procedures down. This is just my own story. I don't want anyone to feel bad if they have tried some of these more invasive procedures. You have your journey too. We're all trying our best.

Anyhow, my instincts and gut told me that my IC is a systemic problem, not a bladder problem, and this was conformed to me by my Mayo doctors with 100% certainty. They didn't even bother having me see a urologist. They sent me to all the other doctors to help me identify a system 'root of the problem'.

Please remember, this is just MY IC journey. I'm not trying to be prescriptive here. Just sharing my story.

How am I now?

Well, you can't blame me from completely walking away from the medical community at this point. I'm done. I will not see another traditional doctor unless an extreme circumstance warrants it. To me, the Mayo clinic was my last-ditch attempt with the medical community. They have consistently made me worse via drugs and antibiotics. I'm so mad about it. I don't mind being 'under the care' of my awesome urologist, but quite frankly, I think I have more to contribute to my health than he does. So while I am 'under the care' of him...I don't really feel like he's doing much for me as I 'm not taking any medications from him.

Back to my terrible story: I had itched for about 6 weeks with absolutely no relief or improvement in the slightest. I spent 99.9% of these weeks in bed. The .1% involved me using the bathroom and taking epsom salt baths. It had been 2 weeks after they cleared my miscarriage via D&C, and there was no relief. I had hoped it would improve when the 'foreign tissue' was out...I wondered if my body was reacting to the uncleared miscarriage...as if I was 'allergic' to the tissue.

Well, I started trying all kinds of non-traditional and traditional things: I did a juice fast for 1.5 weeks. No improvement. I took antihistamines...1 dose would help me for 2 days and then the itching would come back full force and worse than before!

I then had an incredible voice come into my head: It told me that the itching was a gift. It was a symptom that would push me to find true healing. Don't suppress it. Look for an answer.

At this point, I was so desperate that I was willing to see a freaking witch doctor. All I wanted to do was mourn the loss of my baby girl and I could move forward. The itching had halted my mourning process.

Well, that's when I found homeopathy. Websites like quack watch are not supportive at all to homeopathy. They have their opinion, and that's fine by me.  Homeopathy in general is not popular with people in the USA. However, homeopathy is booming in Germany, England, and various 1st world countries. To me, it's not a fad. It's real and it works for people.  I began working with a homeopathist named Joette Calabrese. She is a student of the Prasanta Banerji Protocols (an advanced form of homeopathy). In a nutshell: the Banerji Protocols are pretty incredible at treating and curing cancer. They've gotten so much attention that the MD Anderson Cancer Center has invited the Banerji's to join them in sharing how homeopathy can heal cancer. Evidence of this claim can be found here and here and here. Of COURSE we haven't heard about this in America. We don't like homeopathy here, so we won't talk about it, not even when people like me have hit dead ends with traditional medicine. 

My results in using homeopathy: My dear IC friends, the results have been amazing. My itching is so much better. I can wear jeans again, move about with minimal discomfort, I can brush my hair, absent-mindedly scratch my face, and there is minimal response and minimal discomfort. And also, the amazing thing is, that my IC is better too! SO MUCH BETTER! I feel like it's getting better each week. 

There are 2 caveats: 
1) the homeopathic remedy has been slow. It's like watching your children grow: from one day to the next, you can't tell a difference, but from perhaps one week to the next you can!
2) The Banerji Protocol is NOT classical homeopathy. It is a very specific form of homeopathy, and it is pretty incredible. I will explain more about how it works in a subsequent post here on this blog. If you know anything about classical homeopathy, the Banerji Protocls may sound like blasphemy to you. I am open to anything at this point, and to me, the Banerji Protocols work.
3) For now, let me share with you what my protocol is for IC + Itching:

a) 5 pillules of Staphysagria 200C once at noon on Thursdays and once at noon on Sundays.
b) 5 pillules of Meddorinum once at Noon and once at bedtime, every day (so 2 doses a day).
c) 2 tablets of Natrum Sulph 6x, once at Noon and once at bedtime, every day (so 2 doses a day).
A-C above are for the histamine/IC issues. I need to take each of these at least 15 moinutes apart from each other  I need to do this for one month and report back to my homeopath. I've been on it for 2 months and I'm significantly improved. It has helped my IC and it has also helped my itching. 
Just recently I was given an additional remedy for the itching:
d) 5 pillules of Antimonium Crudum once at noon and once at bedtime, every day (so 2 doses a day)

If I had IC and severe food intolerances, and if I came to this blog post and read these remedies, do you think I would order them online and start taking them? You betcha! Do you think I would make an appointment with the above homeopath, Joette Calabrese, (she does Skype appointments)? YES!

I've tried so much, and so little has worked. This is working. I hope to find complete recovery through homeopathy.

Best wishes to you in your IC journey, dear gals.

And I will post more about the Banerji protocols soon.

Xoxo,
Paola

P.S. in light of how well homeopathy has been working for me, I stopped Total Body Modification. I think it's amazing for some, but not the quickest path to healing for me.