Tuesday, February 14, 2012

Quest for Life

Just thought ya'll would like to know - my period arrived last week, Feb. 9th! Not going to get in too much detail, but I was happy to have the pain, cramps & "stuff" that I've been getting since I was 11! Back to normal here, I hope :)

In other news, my friends finally convinced me it was time to give my body a break and surrender to Prednisone. I started a round of Pred last Friday, Feb. 10. - dose of 5mg/day, for 30 days. That's the time I have left to find myself a new rheumatologist! My GP told me "this is no way to treat RA! - you have to promise to make it a priority to find a rheumatologist!" (to clarify, it was my GP I crawled to, to ask for a round of Prednisone...) So far so good with Prednisone... hope I get an appointment with a rheumatologist soon. I've had some setbacks, thought I found a good one twice, but one doesn't accept more patients and the other works in the hospital that sent me home, when my liver was failing! (not going back there again...)

I did go see my GP for another reason as well though! I get regular check-ups for my blood, more specifically my liver. I'm taking Chinese Herbs, and want to be sure they're not doing damage to my liver. The results were amazing! All my blood work came back better than maybe ever before! My cholesterol was Perfect (162), liver purring like a kitty cat ;-) A nurse told me, I should frame my test results, they're so good! I'm happy the overhaul of my diet and the Chinese Herbs are helping me. I was all smiles after :)

My OB/GYN appointment was rescheduled to Feb. 28 - going to ask for a recommendation for a endocrine gynecologist. I see lots of medications in my future, but such is my path. When I do surrender to medications, I know I've tried everything else. Still keeping common sense as my companion though! :)

This is how I looked a few days after my official diagnosis, on my 35th birthday ~ I had a glass or two of wine that night :) (removed the picture) Sure helped me mellow out, after a stressful week! The anniversary of my diagnosis is coming soon & so is my birthday! Maybe I'll be in square 1 around the same time this year again... I hope to have started treatment, at least. I have heard lots of good about Enbrel... contemplating if I could ever give myself a shot. At this time, I don't think I can/could. But - first things first, I must find a rheumatologist who:

1. Knows what they're doing
2. Has waiting time less than 30mins
3. Speaks fluent English
4. Is a woman
5. Listens to me
6. Believes me
7. Won't tell me "I've been doing this for 30 years"
8. Has been a rheumatologist for 10-15 years max.
9. Understands my complicated medical history
10. Takes me seriously !

A leader, once convinced that a particular course of action is the right one, must....be undaunted when the going gets tough." Ronald Reagan

Sunday, February 5, 2012

Link between hormone imbalance and RA

I was diagnosed with RA a year ago. I haven't had a rheumatologist, nor have I been on any RA medications since May 2011. It's been a constant flare up since October 2010, only increasing in intensity. I wanted to treat ( If I'm perfectly honest, perhaps cure ) my RA with Chinese Herbs, and I had a great summer  of 2011 because of them. Long story short, my body is sensitive & it is no different with how it responded to the long term use of Chinese Herbs. And by long term I mean 3 months. Yes, the herbs were helping me, but they left my menstrual cycle a mess. As I've said in a previous blog post, I was desperate for relief, so I started a modified herbal regimen in the end of November -11. It was definitely easier than finding a rheumatologist, who I trusted. But the consequence of that was, my menstrual cycle continued to be a mess. First 3 months also gave me high blood pressure & high ALT/AST liver function values. The high blood pressure alone was enough to make me stop in my tracks! The 2nd round of herbs seemed to have sealed the deal on my menstrual cycle just raising its hands up "I give up!" I've had 3 "periods" in the last 6 months. 1 relatively normal back in August, then 2 barely there, spotting for a week. Average cycle length has been 60 days or so. As all women, I too don't mind not having periods, but the consequences of that may be dangerous. The 2nd round of herbs also seems to have dried me up. One of the herbs, Arthral EZ, seems to have dehydrated me. I feel it everywhere. My dry mouth might be a side effect of this herb (and not Sjogren's syndrome, like I started to think). All in all, if I compare the herbs to western drugs, the side effects are very minimal with the herbs.

The herbalist knew the most helpful herbal combo (called AI#3) has a side effect of eventually affecting the menstrual cycle. Women are supposed to take it up to 3 months, then take 1 month break (supposedly for the period to return). My body responded negatively faster than the average woman. The fact that the herb mix I was on, affected my periods, leads me to some conclusions. I think the herbal mix changed my hormone levels & it is still doing it. When I stopped the herbs back in August, I think RA came back with vengeance because my hormones were even more messed up vs. what they were before the herbs. I'm supposed to meet with my herbalist this Thursday, to get my next months supply. The herbs help me, so I'm hesitant to stop. But I feel for $300/month I should be able to have a regular menstrual cycle, slow the disease progress & have more pain relief! Do the herbs really do anything besides act mostly as an analgesic? In addition to the herbs, I still take minimum 1200mg of ibuprofen a day, and I've been doing this for more than a year! And I still sleep & live with pain, disability & fast progress of disease, regardless.

I also have PCOS, polycystic ovary syndrome, diagnosed a few years ago, currently untreated as well. My body responds poorly to birth control pills, so I have to find another way to manage that. My ob/gyn doesn't specialize in PCOS, so I would also have to find a new ob/gyn to address this issue. My periods have always been very painful with a heavy flow, bloating, aches, migraines, mood swings & I seem to have been irritable/annoyed all the time. Seems it has been a full blown PMDD. Before my herb induced (I think) menstrual problems, I spent half the month suffering from the effects of my menstrual madness! Now I've been just all over the place, since...

The key to life is balance.
So all in all to summarize my thoughts:

Could it be, hormonal disturbances/imbalance causes RA flare-ups? Could that be the reason RA affects more women than men? Could treating hormone imbalances help minimize RA flare-ups? There is also the question about, what hormones help and what hormones hurt RA. What my independent research shows is that, it's all about the balance of different hormones when it comes to RA. I quote conqueringarthritis.com : " Turns out that estrogen, at normal (non-pregnant) levels, enhance the type of immune responses that cause RA. Androgen suppresses these responses. If you have normal levels of estrogen but don't have enough androgen, it is much harder for the body to stop the out of control immune responses that cause RA."

Following is a list of some interesting websites I came across in my research in reference to this topic.

I think this is fascinating! Meeting with my OB/GYN this Wednesday, as it is time for my check up & I do have some other issues I need to address. I have a feeling "something is up" down there. But I intend to bring this topic up as well. I will definitely continue my weight loss journey, if for no other reason, but to help my hormone levels & overall health. Belly fat seems to be a culprit in creating too much estrogen as well. To be continued...