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Well, it has been quite a ride lately, but here is the latest:
Still in pain and taking pain meds, BUT I feel like things are moving in a positive direction.
Went to see gastroenterologist and he spent an hour with me looking at my medical history that I typed up and asking me questions. He didn't see the need for further tests. He just suggested probiotics and a couple medications for constipation and reflux (which I won't be taking - and I will only take probiotics if Matia thinks they are appropriate). The important thing is that he didn't see anything more alarming than IBS symptoms.
Went to see gynecologist and he did the normal annual exam stuff. It was painful, but not quite as bad as I imagined it would be. He was extremely gentle with me and very kind. I am waiting for pap smear results. He suggested the possibility of endometriosis because of the pain I have before periods, but thought it was only a remote possibility.
Saw a chiropractor/naet doctor, and I felt like the chiropractic adjustments he did were helpful. I've been sitting funky for a long time because of the vulvodynia pain, and after the adjustment I felt more in alignment. The other good thing that came out of this doctor's treatment was that my husband and I realize that I need emotional healing. I don't deal with stress very well and it causes me more pain, and I've had some traumatic events in my life that I felt like I had dealt with already, but now I'm seeing there is more there that I need to address. So I'm doing some research on that.
I had blood drawn this morning for a full blood panel. That should be interesting to see, especially with how limiting my diet has been. Should get the results for that soon.
Going to see my former urologist this Thursday. It is miraculous how I got this appointment. I called his office last week and made an appointment, and the soonest I could see him was January because he is so in demand. But I called again this morning and talked to an amazing nurse. When she heard my desperate situation, she got me in to see him this week! When I last saw him, it was right before I started treatment with Dr. M. I told him about starting treatment with her and he thought it was great and he wished me all the best with it. He has always been respectful to tell me what my options are and let me make choices, so I am glad I have him to turn to right now. I just really need to get off of these pain meds. I am hoping he can help me get the pain under control so that I can start eating more foods and tolerating the herbs and supplements better. Then I can slowly wean off of the meds again. I hate that I even have to consider this, but this is where I am.
Some other things I am considering pursuing are mercury testing (several years ago, I had mercury fillings replaced with better ones, but I didn't know how dangerous it was to do it without all the safety stuff in place, and neither did my dentist, obviously!) Also, I may get tested for food allergies.
So that is the update. Probably more than you wanted to know, haha! Thank you all for being on this journey with me and praying for me! God is giving me strength and guidance, and Dr. M is giving me good stuff to help my body endure all this, even though we haven't been able to get the pain down yet, the herbs make it easier for my body to handle the pain meds.
Please continue to pray for wisdom for my husband and me and for the doctors who are helping me find answers. And pray that God would give Dr. M guidance in helping me bring down this pain. That is my constant prayer. Love you all!!!
Oh Rachel Ann, so good to
Oh Rachel Ann, so good to get an update from you. I will pray you get results from all these tests and doctors to steer you in the right direction. Concerning the mercury fillings, on the blog Deliciously Organic, the blogger recently posted some of her medical problems from having mercury fillings removed, and then how she got better. It was so interesting. I will continue to pray for you. Love and hugs to you!
Thank you, Mrs. A! I looked
Thank you, Mrs. A! I looked up her story and it was very encouraging. I really need to figure out why I am so sensitive to food, and why it causes my bladder so much pain, even though the stuff I've tried is on list 1. Maybe I need to talk to a nutritionist like she did. I'm just not sure where to find a good one. Something else to pray about. :)
I also struggle with IBS and
I also struggle with IBS and constipation issues. I kept praying and praying what to do as the inflammation in my bowels was so bad. But I just could not tolerate potatoes or spelt, it made things worse. I could barely take a little rice, and it was up and down with the rice
inflammation depending on how much I ate. I love to read books on other diets and how they help heal, so
at the time I was reading Breaking The Vicious Cycle
by Elaine Gotschal. I realized while reading the book
that if I took out that little bit of rice, then I could try
adding in butternut squash, navy beans, beets,
carrots, and lentils as my specific carbs since I
couldn't tolerate the list 1 carbs, nor the quinoa on list
3. I have been working on this for the past five
months and this is the best my intestines have felt in
a very long time. And no constipation! Also since I have been doing this for my carbs I don't have any head sores anymore. I have had these awful things for years. I am not following the SCD diet, rather the ICAMA diet but using their idea in the book for my carbs. This is just my journey right now. I hope it is of some encouragement to you.
I forgot to mention I also
I forgot to mention I also have been taking 2-4 T of olive oil a day to increase my fats to help heal. And I always check with Dr. B before trying a new food. :)
Rachel Ann I am glad you
Rachel Ann I am glad you updated us and you are in my prayers. I do agree with Mrs A that it is worth exploring other carbs with Dr. Brizman if she is open to this. Having a leaky gut means for some of us no nightshades or grains (not everyone, just some, for now). Since your diet has been so limited I think this is worth exploring. you may have now food sensitivities or even allergies to some foods?
If we don't excel at health, the only other option is disease.
Thank you Mrs. A and Mimi.
Thank you Mrs. A and Mimi. Yes, I do want to check into food allergies and senstivities. The weird thing is that I react to things like cabbage, lamb, buffalo, broccoli, and cauliflower. I don't know if they have tests for that. I'm not even trying rice or anything. I will check out the book you read, Mrs. A. Any other advice on how to go about figuring out the food stuff is appreciated. I need to do some research on it.
Hi Rachel Ann! So glad to
Hi Rachel Ann! So glad to hear your update and getting some comforting news to know nothing really serious is going on, even though that doesn't take the pain away! I'm not advocating or saying it's the best test out there but the ALCAT tests for many food sensitives and yes, the foods you listed. It was crazy to see the food I was testing very sensitive to and some things I was trying to eat all the time and things I wouldn't eat because already had figured out was causing significant pain. I have found it helpful to have this testing to at least have some idea if I was eating something I shouldn't and by golly there were, all nightshades! I can tell now if I try a bite of potato immediate pain, before I wasn't quite sure if it was that or something else. I hope you get some answers and can get on top of the pain and continue healing! Hugs!
Rachel Ann I found this from
Rachel Ann I found this from a natropath: OXALOBACTER FORMIGINES IS ONE OF THE FIRST BACTERIA TO BE KILLED OFF BY ANTIBIOTICS. IT IS VERY VULNERABLE. ONCE THE GUT MICROBIOME HAS BEEN RESTORED TO NORMAL FUNCTION, OXALATES ARE NO LONGER A PROBLEM. UNTIL THEN, IF OXALATES CAUSE SYMPTOMS, THEY SHOULD ABSOLUTELY BE AVOIDED--JUST LIKE ANYTHING ELSE THAT MAKES ONE FEEL WORSE, NO MATTER HOW HEALTHY IT'S SUPPOSED TO BE. I find a lot of naturopaths are very western cause and effect, treat the symptom, etc...even tho they proclaim to be treating the whole system. But maybe for some of us it does help to take out oxilates, or nightshades or FOMAPs. I am not saying all patients need to do this, but if the oxilates are bothering you? Ask Dr. B what else you might try.
If we don't excel at health, the only other option is disease.
Mimi, thank you for thinking
Mimi, thank you for thinking of me and giving me this information! Is it possible to get tested to find out if this is a problem for me?
We just found out through an extensive blood panel that I have major iron and vitamin D deficiency. I am taking vitamin D now and also an iron supplement recommended by Dr. B. It is helping, but it is causing bladder burning and diarrhea. These things may pass with time as I continue to take it, but we are also going to try IV iron infusion and see if that will work better.
I am interested in possibly doing what Mrs. A is doing and trying different forms of carbs. I have always tolerated potatoes well and spinach, but every time I eat, my pain goes up now. So we are taking things one day at a time and seeing if getting the iron and vitamin D in me will help the inflammation go down.