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Tuesday, April 26, 2016

Ovarian Retirement

A couple years ago, I read the book "Bloom" by Kelle Hampton. It chronicles the birth of her daughter who has Down Syndrome, and the first year that taught Kelle how to live and love in the world of special needs. In her book, Kelle talks a lot about her circle of friends. Friends who drop everything to be there for you. Friends who show up when your house isn't clean and bring breakfast and make you coffee and don't care that you're in your pj's in the middle of the afternoon. Friends who circle their wagons and help you get through the toughest parts of your life.

I longed for friends like this.

I wondered how you collect friends like this.

I yearned for friends like this.

I have amazing friends, and I always have. But at the time I read this book, all my soul sisters lived too far away to show up in person when I was struggling. My counselor told me to just be who I am, and people will be attracted to my energetic vibration, and the right people will come into my life.

I'm all about energy and high vibrations. I know, many are skeptical, but frankly that's your problem, not mine. Skeptics are missing out on the magic of life. I love all things alternative and holistic and energetic and "voodoo," as my husband calls them. It's just who I am and who I've always supposed to be.

So a couple years ago, I just started to let my life light shine. I was who I was. I love who and what I love. I am who I am. I try to make the world a better place every single day, in big ways and teensy ways. I live in hope and gratitude. I believe in peace and beauty and kindness and generosity and honesty.

It's remarkable to see who was drawn into my life over the past few years. Friends who have enriched my life in so many countless ways, I'm in awe that I have been given the gift of knowing them. It's shocking to me how blessed I am.

The past three weeks, I've needed this group of friends. I've been dealing with a lot, and I don't know how I would have gotten to where I am now without my soul sisters from far and wide. Thank you for the hugs in parking lots, the hugs in grocery stores and nail salons and restaurants and the dance studio. Thank you for the virtual hugs from all across the world. Thank you.

I have a list of crazy health issues a mile long. I have gone to my general practitioner year after year, and her advice was to take better care of myself. Stretch. Drink water. Do yoga. Get a counselor. And definitely increase your anti-anxiety meds.

Those are all wonderful words of wisdom. If you're not me. And if you don't have serious health problems that the doctor is ignoring and letting you suffer with every minute of every day. For years and years and years. So I started my own journey of digging for my truth. I went to various doctors of various specialties. I was told I had arthritis. I was told I was fine. I was told I had Irritable Bowl Syndrome and anxiety and inflammation for some unknown reason. I was told a whole bunch of bologna. But I kept digging because I knew these poor "doctors" didn't know any better and were doing the best they could and were totally wrong. I kept digging.

In December of 2014, I found out I have Lyme disease and Chronic Inflammatory Response Syndrome, or mold toxicity. I also found out I have a ton more syndromes that explain all my symptoms. I was terrified and relieved. Finally, some real answers.

Since I look and act "normal," I've had to deal with disbelievers. Those people who don't think I'm sick because I don't act or look sick. I know it's hard to believe, but some people work really super crazy hard to function normally despite their medical problems. I think I deserve an Oscar, thank you very much. My kids need me, my husband needs me, my dogs need to be walked, the world keeps spinning and I decided to just get up and do every day the best I can. Some days are better than others, but I just keep putting one foot in front of the other and moving through life. I try to be grateful for the billions of awesome things in my life, and I try not to dwell on the health battle I'm fighting. Some days are easier than others.

I've been focusing, with every cell in my body, on getting better. It's so slow. Progress with these diseases is so slow, if there is any progress at all. Sometimes there are major setbacks. Many times I feel like what's the point? I'm not ever going to be who I was before I got so sick. But after I wallow a little, I get out of bed and start trekking again. I was given this life for a reason and I'm not going to waste it.

I went to my "doctor" a few months ago for a physical. It was sort of my last ditch effort to let my "doctor" prove herself and her "science" to me. She failed miserably. I told her what I have learned about my health over the past year, the diseases I'm facing. She said there seems to be something we're missing, did more blood work (which I told her would all come back negative because it's the blood work that all "doctors" have done on me and nothing shows up, but she did it anyway) and guess what it showed? Nothing. Apparently I'm fine.

I'm also done. Done with this doctor.

So. I'm going to disclose a little TMI here. Prepare yourselves. If you don't want to know, don't read it. I won't be offended. I won't even know, actually. As I said to a new friend last week, there really is no such thing as TMI for me. You can ask me anything, I will talk about anything, nothing is off limits as long as we're helping each other figure out life. So there's your warning.

Since Ella was born almost 7 years ago, my cycles have been bonkers. Actually, non-existent. My "doctor" said it was because I was using birth control pills and not to worry. Stretch more. Reduce stress. Get a counselor. Done, done, and done. Still was worried. I know that lack of cycles can be normal when you're on the pill, but I just had a feeling something was up. But I believed my "doctor" when she said I was fine.

Fast forward to 3 years ago. I told my "doctor" that I really thought I was going through menopause. I had lots of wacky symptoms. I still wasn't getting my period. She said...see if you can guess. DRINK MORE WATER! GET MORE SLEEP! REDUCE YOUR STRESS LEVEL!
does she not understand that the only way to reduce my extreme amount of stress is to not have my four children who have special needs???

She actually laughed at me, said a 36 year old can't go through menopause, and upped my anti-anxiety med.


So here we are a couple months ago. I see a dietician who uses "alternative" ways of finding out what supplements my body needs based on muscle testing. We talked about how I'd been on the pill so long in my life time that maybe I should try to get off of it because it can really have yucky ramifications for your body long-term. So in January I stopped taking birth control pills.

I'm waiting....I'm waiting...still no period. Everyone tries to calm my nerves by saying that when you get off the pill it takes a few months for your body to reset itself, hormonally. Not to worry.

Three weeks ago I decided to start worrying. I went to my OB. She ran blood tests. She said it would be very unusual to be going through menopause at 39.

The OB called the next day. She said my hormones were all wonky (my word, not hers) and she wanted more blood tests. Also my prolactin level was high, which is abnormal.

I immediately consulted Dr. Google. I found out prolactin is made by your pituitary gland. This gland controls pretty much everything in your body, and if it's out of whack that's really not great. High prolactin can be caused by a pituitary tumor, usually benign. These tumors can usually be treated with medication to reduce their size and their negative effect on the body. So you know, not horrible-I'm-dying news, but not the best thing to find out either.

I got more blood work done at the OB. She got the results and wanted to talk to me in person. In the meantime, a soul sista had given me the name of her endocrinologist and I had an appointment with him.

As an aside, anyone ever noticed how super-crazy-brilliant doctors have very crappy social skills? And horrible fashion sense? Years ago when Alex had his appendix out, I told him my theory about doctors: if they show up with just terrible fashion sense, you can trust them with your life because that means they're insanely awesome doctors. Anyway, the doctors that the kids and I see who have really problematic social skills are always the ones who get the best results for us. I think you can't be both. You have to let your brain live up to it's full awesome-istic potential and let it win, or ignore that brilliance and become a socially acceptable human with passing social skills.

The endocrinologist met with me. He said the anti-anxiety med that my "doctor" kept increasing has been known to affect the pituitary gland and cause hormone problems. So he wants me to get off the medication, spend 5 weeks off of it, then come back for more blood work to see if the problem was just the medication, or if I need an MRI to diagnose a pituitary tumor.

Fun times.

In the meantime, I saw my OB to chat about my impending menopause. She was very serious. She said she was shocked at my results. Not only was I in menopause, but I was so far IN that I have ovarian failure. No, let's say that ovarian FAILURE. My ovaries have FAILED. They are shriveled up dead little raisins now, apparently. The OB said if I wanted to get pregnant and went to a fertility specialist, they would be sad for me because there are no more eggs left. I would need an egg donor.  She kept saying she was shocked at these results. She was not expecting them at all. I asked her where do we go from here. She said I have to start taking birth control pills again to give my body a low dose of estrogen. She said most women will spend about 30 years in menopause. I will spend about 60. SIXTY YEARS IN MENOPAUSE, PEOPLE. SIXTY. The OB said it's not a choice, I absolutely have to be on the pill for at least the next few years. I asked her about the negative side effects of birth control, having been on the pill for so many years already. She said if I had not taken the pill all those years, I wouldn't have my babies. The pill saved my eggs so I could have babies.

I wouldn't have my babies.

It was my turn to be shocked. A choice that I casually made -to be on birth control- so that I could control when I had babies turned out to be the life changing decision that has given me my four children.

Shocked. The doctor and I were both shocked.

Ovarian failure. What the heck, ovaries?!? Why are you checking out on me?? I am totally done having babies, this isn't about babies. It's about my body, yet again, failing me, and yet again no doctors figure it out until I go pounding on a million Doctor Doors asking for help.

I had to get off my medication. I asked my "doctor" if she could just give me a lower dose to start weaning off of it. She refused, and said I had to come see her in person. So at 7 am on a Saturday, I went in. I was sweaty with dread because I knew I had to talk to her about her lack of doctor-y-ness and the fact that she failed me for years and years.

She is a lovely person, my "doctor." I would love to be friends with her in real life. I just feel sorry for her because her head is so far stuck into the box of mainstream medicine that she can't see when there is a patient right in front of her who is truly suffering with real health problems. It's very sad.

My "doctor" started launching in to her spiel about just whatever she always talks about. Stretch, water, blah blah blah. Finally, I stopped her and tried to explain to her my Journey of Doctors over the past few years. I told her how frustrating and scary it is to know that doctors, who are supposed to know more than I do and are supposed to help me, have failed me time and time again. I know they all do the best they can, but their best let me live, sick and suffering, for way longer than I should have.

My "doctor" had a "reason" for all her decisions regarding my medical care. It was a bunch of crap. She would still be relying on those stupid blood tests that said I'm fine, if I hadn't brought in all the blood tests from all the doctors I've seen and the unending list of all my symptoms. Done. I'm so done with her.

So I'm weaning off this horrible medication so I can see if I have a brain tumor. super awesome. My "doctor" said the problem with this medication is that many people do really well with it, but it's virtually impossible to come off of. So, do we think we should be putting humans on synthetic medications that are virtually impossible to stop taking? Had she told me this when she first put me on it, I would have said no thank you ma'am. I'm fine being just an anxious ball of nerves because of my extreme level of stress.

As of today I'm off the medication totally. The doctor said some people who are withdrawing from it have "zingers" where they experience electrical shocks down their arms, fun things like that. I'm not having that. I'm having what feels like an electrical storm in the privacy of my brain. I feel like my poor little brain is being shocked over and over and over all day and night. I feel nauseated. I can't make decisions. I have a headache the size of Montana. My brain refuses to function. My vision is all wonky. I feel super crabby and snippy and short-tempered. Me! I know, surprising, right? (Don't answer that, Alex. That is a rhetorical question for people who only see me out in the world where I have my makeup on and my "I'm Fine" Face on.) This is a little piece of hell, going off this medication. Hell. I can't imagine what the med was doing to my brain while I was on it, if this is how I'm feeling getting off of it.

So the past couple weeks have been emotionally draining for me. I find out I'm in menopause. I have ovarian FAILURE. I may have a brain tumor. I'm dealing with serious withdrawal symptoms. ugh.

Oh, and I'm going to milk that brain tumor for all it's worth, if I do end up having one.

I'm sorry, I can't do the dishes tonight because I have a brain tumor.

Nope, can't take out the garbage because I have brain tumor.

Sorry, didn't mean to swear at you for being a stupid human, I have a brain tumor.

I think I'll have a shirt made with the logo: Pardon my insanity, I have a brain tumor. And a sticker for my car too: Brain Tumor On Board.

Gotta get some use out of it, right? And who knows, maybe it's just this stupid medicine.

All of this news left me reeling. I thought I was making progress with all my other health issues, and wham! More to figure out and deal with. When does it stop? What else in my body is FAILING me?

Alex asked me, in a very sensitive, sincere way, why it's hard to deal with the news about my menopause and ovaries if I didn't want any more kids anyway. I had actually been trying to figure that out myself. It's just a shock, I guess. You don't know what's going on in your body and then all of a sudden you find out that -only because YOU yourself kept demanding answers- your body is just not what you thought it was. My friend, Lisa, put it the exactly perfect way. She said, "Who comes up with these names? Tell your ovaries they are not a failure, they gave you 4 great kids and that's a lot more than most ovaries can say! They are amazing, they did their job and now it's time for them to retire. How about ovarian retirement instead of failure?" Love this girl.

Yes. This is the sort of soul sister I have the pleasure of having in my life now. Ovarian retirement. I love it. I guess it's just hard to know your body is "FAILING." On whatever level. Something isn't working right and it's failing. I hate failing. At anything. Even ovaries. I don't fail at ovaries!!

But apparently I do. Who knew. There is a history of crazy things happening to women in my family in regards to hormones and babies and things, so I guess it's just getting more pronounced as the generations go on. My OB told me to make sure Ella knows that if she wants to have babies, she has to do it early. How horrible is that? You have to make sure your daughter knows that she doesn't have time, like most women do. She has pressure to make decisions about her babies and if and when to have them. Sorry, Ella. My failing ovaries have failed you too.

Trying to find the positive inside my noisy, electric-shock brain. I can't believe how blessed and lucky I am to have the four babies I have. I thank God for them a million times every day. And I am beyond grateful to my family and friends for being there for me. Through everything, always. I know I have a strong circle of beautiful friend souls, just like I read about in that book years ago. I can't even begin to express how much you all mean to me. I am beyond blessed.

Alex said I found out about all this hormone-menopause-no-eggs-left-possible-tumor because I did what I always do- for the kids and for me- I just kept digging. I didn't think the answers I was getting were correct, so I kept searching. Knowing is always better than not knowing. I can't encourage you enough to follow your gut, follow your heart, find the answers you deserve if you feel like you don't have them yet. One thing I've learned is that no one is going to hand you the answers to your own mysteries. You have to be your own advocate, you have to search tirelessly, you have to ask so many questions and have so many people think you're insane. But if you do that, you'll find what you're looking for. And then you can blame everything on your possible brain tumor.

I wonder if I can get a parking sticker for a brain tumor...


Natalie Leske said...

What a Journey, Carrie! I am so glad you have great friends and the fortitude to keep digging.
Ever notice how only female body parts fail? Ovarian failure, incompetent cervix... Ever hear of an incompetent penis? Testes Failure? Well, let's just stop being nasty to all parts female and male. You have a wise friend with good counsel.

I long for a time when those of us who have or have kids with atypical brains and bodies or illnesses outside the box, are not ignored blamed, or labeled as crazy troublemakers. It helps to know we are not alone. So thanks again for your blog.

Hana Copperman said...

Reminds me of the 20 or so years I spent (age 9 to age 32, roughly) trying to figure out what my Tourette's was. No doctor knew at that time. I had practically memorized Dr. Spock, the "Bible" of parenting in the 60s.

Hang in there. And a friend of mine went into menopause at 25. Why do I know about this and not the doctors?