I'm BA-ACK...With a Few Hard-Earned Words of Wisdom

So, yeah...I haven't written in quite awhile, mostly because I was sick of being sick and was sure everyone who bothered to read was sick of hearing about it. I am relieved and happy to say I have finally turned a corner!! I still have to take a lot of...stuff, and it's time-consuming as hell, but I'm getting better, which certainly makes it worth it to do all I have been doing.


There have been several good things in the past year or so. Not only have I discovered coconut oil to be my best non-human friend, but I can honestly say now that I'm confident I'll live to 50. That isn't that much longer, but time was when I honestly thought I wouldn't--really.


I have learned some invaluable lessons over the past nearly 8 years, the biggest of which is that all we hear about the female "change of life" being a simple transition is sheer bullshit. Here's a warning to all women under 40 and anyone who loves them: Be prepared. Research. Listen to your body. Think outside the box...and NEVER, EVER blindly trust anyone, even a doctor. Now that I know what I know, I am not only much wiser and more...educated and informed, but I am also trying desperately to heal what was done to me by someone who has no business treating women over 35 for hormonal issues. The sad fact is that, like any medical specialty, gynecology has its "sub-specialties," and sadly--frighteningly--many really don't know...what they don't know.


One of the biggest fallacies about menopause is that we...just suddenly sink into it. Wrong...so wrong!! For most of us, it will be a gradual process...and for some, like me, it will be a slow descent into hell. I am a bit less scared of what 50 will bring than I was even a year ago because I have toughened up and learned. A lot of people I know online think of me as a tough chick who knows what it's like to be completely betrayed by some very incompetent doctors and probably figured I wouldn't ever be misled again. I'm sorry to disappoint you if you really thought that, because my back was turned, again, and I am now learning from it.


So...don't we just "go on hormones for awhile, and it'll be all better"? Umm...no. NO. NO!! For one thing, we have been lied to...big time. So many women, and even their doctors, think we just need estrogen for awhile, and life will be good again. I thought that. That's what I had been told, so I did it...and it was the biggest mistake of my life.


Okay...so back up a minute. What really went wrong? How did I become so sucked into thinking life would be so good once I got onto estrogen? Because that's what we all hear. That's what our mothers were told. That's what our doctors were told, so that's what we are told. Therein lies...the big lie. The fact is that estrogen and progesterone both decrease during perimenopause--yes, perimenopause, aka the long, slow train to The Big M. Perimenopause occurs when hormonal balance becomes unbalanced--estrogen, progesterone, thyroid hormones, etc. Progesterone actually falls faster than estrogen does.

For some, it can be a relatively simple transition, but it can be very sneaky in how it starts and progresses. I woke up one day, soon after my 40th birthday, to horrible fatigue; dry scalp, skin, and hair; cold extremities, weight piling on, horrible bone and muscle pain, and dozens of other symptoms. It would take months--months--to see an endocrinologist. The good news was that she promptly figured out what my problem was, even though my labs lied like a damn rug: I had a very sluggish thyroid, so I was put on a medication for that, and within 4 months or so, I felt better in many ways, but something still wasn't right. She then discovered my vitamin D was almost zero. A normal level is 35-100!! So, we worked hard at getting it up for over two years. I was slowly getting better.


Then, suddenly, I was starving--all the time. I literally couldn't even stand up unless I shoved protein down my throat about 15 times a day. I knew my blood sugar was crashing; it had crashed all my life if I didn't eat on time, and it would make me horribly and very suddenly sick--lightheaded, exhausted, clammy, weak, and with a brutal headache--just what I needed with hydrocephalus! It was then discovered that I had Celiac Disease, which is the body's severe autoimmune reaction to gluten, a protein mainly found in wheat, barley, rye, and oats...so I had to learn to eat all over again at 41. I did, and I have become amazingly good at it...but I was still very sick. It has had some great benefits, though, including one I never suspected: Being gluten-free has stopped over 40 years of seizures!! Who'd'a thunk it??!!


About this time, I had timidly agreed to going onto hormone replacement therapy. I was too sick to even think of it at the time, but I began to have a multitude of serious problems right after starting it: complete inability to sleep...at all; moodiness; confusion; awful brain fog; frustration; horribly dry and itchy, crawling skin; dry, gritty eyes and other membranes; nasty pasty, peeling, burning mouth...and a multitude of other symptoms. I then changed epilepsy medications, and suddenly, I had horrible heart racing, heart pounding, constant sweating...I was sure I was going completely insane. I started to take over the counter medication for my symptoms when it dawned on me that the new symptoms might be hyperthyroid. They were the exact opposite of what I'd had when my thyroid was horribly low, and fortunately, my endo quickly figured it out. She took me off the thyroid med and suggested I see if I could get my seizure med lowered or changed. I did...and I seemed marginally better for awhile, but some things were much worse. I wanted to rip my mouth off. The peeling, blistering, and bleeding was unbearable, and I was constantly scraping at it with my fingernails because the sensation was too much for someone who'd already had a lifetime of oral sensory issues.


Mercifully, I had been hearing and reading a lot about Candida Yeast Overgrowth, which is often an issue with autism, and we quickly determined I had severe oral thrush--a yeast infection of the mouth. I went on an anti-fungal medication and tried very hard to combat it. I learned to eat plain yogurt--the most vile shit ever--because I wanted so badly to get better. I took probiotics as diarrhea made my life a living hell. I would WIN. I had to...but it would be a long time before I felt significant improvement.


Then, after my HRT had been changed at least a couple of times, my cramping, moods, exhaustion, and confusion got worse. I had very irregular, horribly heavy periods. I went back to the gyn and begged him to look inside me. Lo and behold: several fibroids. I then asked, mostly seriously, if he could "just take it all out," and at first, he mentioned my 70-lb weight gain over two years, but then he started to mortify me by suggesting that if I looked like the 22 year-old, size 4 med student who was with him, I wouldn't have to be concerned with the associated risks from the weight gain.


Well, I mustered every cell of my being to keep from throwing him through the nearest wall, but it was the excuse I needed to look for another doctor. I spent the weekend looking, after I had nearly bled to death when he had abruptly yanked me off the hormone pill, and I found a highly-recommended doctor across town. I called and made an appointment...and got in for almost 3 months later, but when I walked in, she took one look at me, said I was estrogen dominant, and I had to get off the HRT immediately. Long story shorter: I was very lucky I didn't have any number of gynecological cancers, diabetes, heart disease, and intractable epilepsy from the severe imbalance.


There was great improvement for awhile, but then I slowed down a lot. I researched thoroughly and asked a perimenopause group online about their experiences with progesterone cream. After seeing no significant reason not to, I started it. I used it as directed and was slowly improving, but again, after several months, I thought I should be better than I was, so I kept reading and researching and decided I had to increase it again. Over several more months, I increased it steadily and am now on it 4-5 times a day...and I'm getting well--at last!! My Candida is no longer systemic. My thrush is minimal. My Ambien actually lets me sleep all night. I am eating again.


I have also recently increased the coconut oil to four times a day, and I'm noticing that the horrible muscle pain I have had since getting off the estrogen is getting better. I'm not having constant hot flashes. I can think. I still have a lot of weight to lose, but I think now that I can probably lose it if I continue doing what I'm doing. My life is finally coming back, but I had to learn the hard way that so much about what was happening to me had resulted from severely incorrect medical treatment. If it can happen to me, it can happen to you. Advocate for yourself. Question anything that doesn't make sense to you. If you're getting worse with treatment, another approach is necessary, and the sooner, the better. It can mean the difference between life and death. 

So, it's been awhile...

I simply don't have enough creativity or energy to blog every day, but even I'm surprised that it's been a week and a half since I last posted.

There's a lot going on in my life that I have to learn about to help myself and my son live our best lives, and there seems to be no shortage of new avenues to study and explore. I'm not one of those militant moms who lives for a "cure" for autism, simply because I don't believe there is one and seriously doubt I'll see one in my lifetime, but new ideas and theories abound all the time, and although I find it all exhausting and pushed a lot of it away for a long time, I am starting to see the merit in some of it and even some great importance in why I must learn about certain aspects of what is being hailed by some as keys to "recovery."

Autism "recovery." The debate of the century rages on. Some are insistent and believe whole-heartedly in it, while others (mainly autistic adults themselves) are adamantly opposed to it and see it as sheer quackery. I'm somewhere in the middle, and only because I have recently discovered that I have some of the health issues that these proponents of "biomedical interventions" are so insistent can "cure" autism. I am not trying to "cure" or "recover" my son, but after the past four years of struggling against my own body, I now know that I have Candida overgrowth. This systemic yeast invades the intestine and flattens the flora, which are the structures that absorb the nutrients from the foods we eat. I now know that my flora are badly damaged from years of antibiotics used to treat acne and other maladies that subsequently made me resistant and, therefore, made my son resistant to antibiotics as well, largely because I was horribly sick with bronchial pneumonia through about 2/3 of my pregnancy and thus given copious amounts of antibiotics to cure me.

Of course, not a word was said about taking probiotics to preserve my digestive health...and it all came down on me years later in the form of several autoimmune problems. Due to all of that, and especially being sick during my pregnancy, it also left my son with a weakened ability to fight infection. A long string of ear infections resulted. I now also have an intolerance to a long list of foods...and I fear the same for my son. I already know he's gluten intolerant, as are my father and both my brothers, and he is about 95% gluten-free now. Symptoms he had like chest discomfort, reflux, and abdominal weight are gone now, and other things, such as constipation, will probably eventually resolve. I just hope to God he doesn't have Candida, as I do, and I am starting him on a precautionary probiotic to guard against it.

All of these are biomedical treatments that are touted to "recover" kids and adults from autism, but if he improves--particularly with his language ability--that will only be a bonus. I'm doing this because if he feels even ten percent as miserable as I did before starting this, it has to be done for the sake of his physical health. Gluten intolerance and Celiac Disease left untreated can lead to diabetes and cancer, as well as other serious health problems, so I know we have to be gluten-free. That's my only reason for doing this with him, but if some improvement in his ability to live his life independently comes of it, that's all good, too.