Friday, April 29, 2011

P.S. Apology

So,  I just read my last couple posts and realized that they may have sounded harsh and judgmental towards those that rely on surgery or Rx's.  I want you all to know that I completely respect everyone's decisions regarding these things.  I understand that many people have very little say over whether or not they have the surgery and or meds.  I feel so very blessed that I am able to control mine so far with such noninvasive means.  I imagine if I start having major problems I may have to do one of the two of those things as a last resort, but I am hoping and praying that I can keep it under control as I have children and there after!  I greatly appreciate all of the prayers and good vibes that many of you have sent my way and I ask you to do the same for everyone with our problem!  I know I have felt your love and support and hope you all know you have mine as well :)  Keep smiling and shrinking those tumors!!!

Thursday, April 28, 2011

What I have done...

Ok, I'm sure lots of you are wondering what I did to get pregnant.....well, I should say, what I did medically :)  ha ha!  I have made myself a guinea pig of sorts and I am so excited and thrilled to have another little miracle coming to our family!  I will give a brief nutshell history of everything so far for those of you trying to catch up or just refresh on my story.  If you have questions on the oils I use and why I use them see THIS post.

Diagnosed with 7mm tumor March of 2008.  Went on Bromo and clomid was pregnant within one month.  I miscarried after 9 weeks had a D&C in June and started all over.  Bromo made me miserable.  Major sinus problems, vertigo, severe nausea, bloating and dizziness.

In December 2008 we were pregnant again with our little man!  Had an uneventful pregnancy and gave birth to a beautiful perfect bouncing baby boy on August 6, 2009.   After nursing for 3 months and many many severe headaches I went to the doc to see what was up.  MRI in November showed a 12mm tumor pressing against my optic chiasm.  I was recommended to an endo and neurosurgeon.  At this time I had no inclination towards "alternative" or "natural" remedies.  Endo wanted me to quit nursing and go on meds.  The Neurosurgeon wanted me to quit nursing and have surgery.  I didn't feel good about either and started writing this blog and went on my quest for natural alternatives to what was recommended.  I just knew that God had put some sort of natural remedy on this earth to help me!  Started vitex.  After several months there was no change.

January of 2010 I went off vitex and started Frankincense February of 2010.  Headaches were gone within days and after a few weeks my prolactin levels dropped from around 250 to around 200.  A few weeks later they were at 150 and over the course of a few months they were down to around 100 while nursing!  They plateaued at 100.  I stopped nursing and got another MRI at the end of June.  My tumor had shrunk from 12mm to 10 mm while nursing and on frankincense.  I started other oils to push me past my plateau.  My levels went down a bit, but not as much (or as fast) as I wanted....I am so dang impatient!  Wanting desperately for my period to start again for pregnancy and anti-osteoperosis reasons I started on caber in August.  Within 3 weeks my prolactin was at 7.  The lab lady made me come in and retest as she had never seen prolactin go down so fast.  I attribute it to the synergistic combination of cabergoline and frankincense.  I took cabergoline very minimally and had zero side effects except for the two week period in which I ran out of frankincense.  In those two weeks I suffered severe depression and headaches.  Once I started ovulating in Oct. I never took it past ovulation day...so about half of the time.  My prolactin levels stayed between 6 and 17.  Once I realized my periods were lopsided (follicular phase was at 24-25 days and LP was at 7-8 days) I started using oregano and thyme on my adrenal and uterine reflex points on my feet an ankles to increase my progesterone and clary sage to help with cycle regularity and fertility.  I also used Whisper blend to help with hormone balancing and Balance blend to reduce stress and help balance hormones.  Every month my LP would lengthen by about 1 day.  Cycle 5 my Ovulation day came before day 20!  That is the magic number apparently.  If your egg is released after that day it is past it's prime and may not fertilize or even if it does it will probably not implant.

Anyway, I am still continuing with the frankincense at this point as well as cycling lavender, grapefruit, wild orange, and patchouli.  I have cut the doses in half, but I want to keep this thing under control so I don't have to bring my levels down from 250 again or my tumor from 12mm!  Also, I have been using peppermint to keep my nausea at bay and wild orange to quench the heartburn and acid reflux!  I have been so much less sick with this one and I attribute it solely to the oils, grapefruit and ginger ale :)  Thank you all for your great support, well wishes and prayers!

Dr. MacGregor

As most of you know...if you have been reading my blog for any length of time, I struggle with doctors.  I don't hate them, and I consult with them (most of the time)  I just don't agree with their perception of my health and what I need to do to take control of my tumor.  It really sort of ticks me off.  When I explain what I am doing they look at me like I am an idiot and tell me (this is what I hear...not neccessarily what they say)  "You are patient two hundred and thirty seven that I have consulted with prolactinoma.  For every other case this is what I have them do and this has worked for them."  This is what I think and wish I had the guts to say, "Well, guess what genius-that-went-to-twenty-seven-years-of-college-to-tell-me-what-you-do-for-everyone-else!  I am not like the other two hundred and thirty seven people.  I am me and I don't want to feel like crap on meds or give up my ideal perception of the type of mother I want to be.  I don't want to have to have surgery after surgery and possibly end up on replacement hormones the rest of my life.  I want to be healthy, level headed, out of bed, happy and capable.  Please just listen to me  and have an open mind and DON'T tell me I must have been doing something I wasn't to shrink my tumor!  I was NURSING.  You can't be on meds while doing so and I didn't slip across the border and get a magical surgery.  I use OILS :)"

Yeah, this has been how I have felt with my last 4 obgyn's and my last 2 endos and the neurosurgeon I have consulted with (In the last year and a half mind you).  Quite maddening.  Even my last obgyn that I saw for my 8 week appt treated me very similar the the other 3 and he takes a "hollistic approach".  So, over Easter weekend I was doing a booth on essential oils and two booths down from me there was an Obgyn and a nurse and the obgyn's wife.  I went over and chatted with them for about thirty minutes while my friend manned my booth.  I was super straight up with him when telling him about my prolactinoma, issues I have with doctors and what I do for my prolactinoma.  He was actually quite excited that I used oils as he uses them at home with his family!  He was fascinated that they had helped me so drastically and he was surprised that I was pregnant so quickly.  He gave me kuddos on how well I knew my cycle and was very funny and put me at ease!  He told me he had never had a patient with prolactinoma before (he has only been practicing a few years) and therefore he would be researching everything....western, eastern and everything in between to help me do what is best for me!  Whoa!!!!  Really?  Basically I just tell him what I do now, what I want the end result to be and he helps me research and look into things that would help me acheive my goal!  How cool is that!  He is just starting his own practice after being paired up with one of the previous 4 obgyn's I had seen and so he has time + resources to help me do this.

My husband and I went to see him the other day and were quite impressed.  He took us into his office and talked to us for 45 minutes and then gave me a physical and we listened to the heartbeat.  He reiterated his plan of attack to help me in my quest.  He recommended me (and gave me a coupon for a free hour energy work session) to see a woman next door that does energy work and works with oils as well :)  Totally cool.  I'm actually looking forward to my next appt since he will have had time to look over all of my labs and ect.  I plan on taking him my timeline and my complete regime to go over it with him.

So, now the question for all of you.  Am I crazy to choose a doctor that has basically NO experience with prolactinoma to be my doctor?  Thoughts and ideas are appreciated.  Also, I plan on asking him lots of questions, so if any of you have a question you would like me to ask him feel free to email me.

Thank you so much for all of the well wishes and congratulations I have received!  All of you are in my prayers and for those of you wanting to get pregnant....pregnancy vibes are coming your way!!!  Have hope and know that it can happen!

Wednesday, April 27, 2011

Big News :)

So......I know it has been a few weeks and I apologize!  I promise this post will have been worth the wait though.  I know it has been for me :) I have been desperately trying to keep my stress levels down without stressing about them :)  ha ha!  Always a fun cycle, eh?  I've been trying to do less stuff and blogging has fallen through the cracks which is soooooo not good since it is a great outlet for me and my stress!  So, it is late and I am tired, so I will try not to keep you all in suspense for too long.  I am having a BABY!  My due date is November 10th :)  Once I started cycling again it took 5 months.  I charted obsessively and the month that my follicular phase dropped below 20 days I was pregnant!  Good thing my hubby has great swimmers...we have that going for us.  I will write more tomorrow about how I finally have a doctor that I LOVE and that is totally cool with using oils, alternative stuff and such. I will also write more really soon about what I have decided as far as my game plan for my "childbearing years" and thereafter and what I felt helped me in my pregnancy quest :)  Stay tuned!!!



Tux "drew" this picture with my help :)  He is going to be such an wonderful big brother!

Thursday, April 7, 2011

Hyperprlactinoma Group!

Thank you Erin for inspiring this idea.   It is something that I should have done a long time ago, but never thought of it!  I hope this helps people connect and share ideas on how to better take control or our "prolactinoma" or anything that has been put under this umbrella!  So here it is:  Hyperprolacinoma Group  or here is the url:  http://groups.google.com/group/Hyperprolactinoma

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