This is how I feel now…

I have noticed the longer I go without the pill, the less & less sleep I get. I kind of feel like a zombie. I feel like my body is edgy & buzzing all the time because I’m not getting rest. And I’m starting to put 2 and 2 together.

For the final 6 months or so that I was at college I was going nuts because I wasn’t sleeping. Ironically, I had been on the shot for 2 years prior for the final 6 months I wasn’t on it because I saw an endocrinologist who told me to get off of it because it was bad for your bones. I have to admit I never put 2 and 2 together that being off hormones takes away my sleep until now. And now I want to know why. Because really I couldn’t live like this.

So my temper is bad, I can’t sleep, I get super hungry, I gain weight and feel edgy/dizzy etc. Ironically my blood sugar doesn’t seem as bad. I can tolerate a wider variety of foods but when the sugar starts going down a few hours later and I get hungry, I’m more ravenous and desperate.  The same things that happen when I am off that beta blocker. I started thinking what do these 2 drugs have in common? What part of the body would they affect or slow down? Of course the thyroid would be one part, but there’s nothing that can be done about that so it doesn’t really matter. The only other part I can think of is the adrenals. I’ve thought of going back into my dr. and explaining what I’ve noticed but I think it could be a big waste of time.

Afterall, as soon as I get my closing $ and that birth control pill in my hot little hand it will be in my mouth so I can sleep again. I can’t wait 6 weeks for them to order some test a you have to get an injection in the hospital to get some result (and that’s assuming that they would even want to do the test). So this is upsetting because I’m realizing that I may never really know what’s going on. It’s complicated. But then again I need to start sleeping good again, immediately.

There’s a reason why I’m wondering about all of this. A few months ago I saw a show on tv about a woman who was diagnosed with PCOS but really had something called Non-Classical Congenital Adrenal Hyperplasia. Basically it’s an adrenal problem that causes all the same symptoms, even the polycystic ovaries. But I’ve never been tested for it and I don’t think most people diagnosed with PCOS are tested for it either.

Over the summer I did an open house for an OBGYN. Ironically she had a book laying out about PCOS. My open house was slow so I picked up the book and thumbed through it- looking for any mention of this other problem. And I found it. It said that in order to be diagnosed with PCOS, a dr. is first supposed to test for the NCAH and rule it out. But I don’t think this is being done for most people. Quite upsetting.

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This is how I felt a few weeks ago…

I’ve been off the pill for weeks now. I don’t have the $ to get a refill until I get my closing. Meanwhile, I have steadily felt the testosterone climbing. I pluck my chin almost every day. I have a few zits now. I seem to get crazy pissed about the tiniest things. All of my emotions feel like they are on edge, like I am feeling things way too hard. Plus I have a sex drive again.

Then I remember that I was off the pill that last summer at college and I was crazy then too. I remember feeling bad and being on the phone one time with a friend & crying my eyes out. Totally abnormal for me because I hate crying in front of people. So anyway, I have connected the dots & put 2 and 2 together. Hormones are nuts.  This is why guys on steroids get more testosterone and go ape-shit.

the chicken or the egg?

I don’t know what to blame more, or what to focus on. I still often wonder is it mainly the blood sugar causing me grief and how much does the thyroid even play into it. I wonder because: today I’m working a 7 hour shift at the model home. I brought tabbouleh for lunch and triscuits and pecans. But after that I was majorly dragging. Just wanted to nap. Then I was starving. I knew this health food wasn’t doin it for me. I need grease, bad. So I went and got a happy meal.

This reminds me of a specific memory. It’s freshman year in high school. The day of a cross-country meet. The coach told us not to eat greasy food because it would make us sluggish. I decided to try a pizza hut pan pizza and see what happened. I ended up shaving 4:55 minutes off my time. Now, I don’t think this would always yield the same results but I just can’t figure it out. Like sometimes I eat mcdonalds fries and get blurry vision and a slow stupid mind. Other times it fuels me for hours and I feel great (like if I do that for my first meal of the day.) There just seems to be no rhyme or reason to how I use food. That tabbouleh was working out great for the last week, until now.

Then there’s another question. The fertility place says that thinner people get PCOS from being high school athletes because that caused them to have too much testosterone. But then they tell us to work out all the time, so I’m confused. Like doesn’t that have to do with why I have the problem in the first place? I also keep drinking iced tea to get some energy during the day. I feel more hypo in general but who knows. None of what’s going on is making sense. It seems like my body craves fat as a fuel, and when I eat super healthy it just backfires.

Frustrated

So I went back to my dr. today since she had taunted me in the past by mentioning doing a “permanent solution” for the Graves. But this time she just acted like there’s nothing that can/will be done. As long as the labs are normal nothing. It doesn’t matter if you have the eye disease, a goiter & the symptoms.

Of course I got really upset and explained that I see this as an autoimmune disease with antibodies that are making me sick and I could care less where my labs fall, I’m sick of dealing with it. So she’s doing the bloodwork again. Whatever. And she basically said the antibodies will kill the gland off over time. Who cares? Why should I have to wait as my gland slowly dies off and fights back over and over?

She then once again mentioned that I might have another autoimmune disease too like Sjogren’s. Which she had mentioned last time. And I asked her if she had done any tests for it because last time she said she would. But last time my ANA was retested and was no longer positive so she said they didn’t do further tests since it would be rare to have it without the ANA. The ANA are the lupus antibodies but they’re present in other diseases. I’ve always thought that could be a possibility but even when my ANA was really high and I was carted off to a specialist it still wasn’t high enough to be lupus. And when further testing was done at that point it didn’t show signs of specific other diseases. So I’m beyond fed up. I don’t understand why this is a disease that is written off. Like you’re supposed to just live with it.

Even if I had another disease too, some of the symptoms of Graves are too specific to blame on a second disease on the side. Getting overheated, red face, anger. Blah, blah, blah. And since I told her my eyes have been gritty and hurting lately she just talked about eye drops. This recommendation NEVER sits well with me. It doesn’t provide much relief. I have only found eye pain relief from taking BUGLEWEED.  My experience has been that you have to go against the antibodies, not pour drops in your eyes and expect them to feel fine.

Maybe I will have to try to scrape together $ and go back to acupuncture, it sounds like it may be my only option. I might go to a guy my massage therapist friend knows since he’s way cheaper. In a way, I wanted to see from this appt whether to try to get help from western medicine and now I’m like, well I guess I got an answer on that one. I do’n’t know how to change this into a disease that drs actually care about and will do research & case studies to be able to treat a plethora of different cases. Because no 2 people with 1 disease will be completely alike.

Still Going

Well I still haven’t made any money recently in real estate so I haven’t been to acupuncture in forever. But I am still doing way better than I was before I ever started acupuncture. My main issue lately has been that I get a second wind late at night and don’t want to go to bed. Then I’m supposed to get up in the morning and I feel dead. The other day I fell back asleep after my alarm went off. Same old song and dance. But luckily I got up in time that no one at work noticed I was late.

I took a waitressing job 2 shifts a week to try to have some money coming in. And this is something I wouldn’t have done when all my symptoms were out of control.

Mainly lately I have been more focused on trying to figure out what to eat for my blood sugar. I’m going to go see a dietician on Tuesday. I’m interested to hear what she will say about wheat. I told my doctor that it seems I have experienced swelling & weight gain since eating wheat again. She said it is just because the gluten-free diet is so restrictive. But I have to disagree the more I think about it. Because it wasn’t as extreme as a no carb diet. I still ate banana bread muffins every morning that I had made with gluten free flour. I ate gluten-free crackers and cookies, pasta. I ate potatoes, rice, potato chips, corn chips (all bad for the blood sugar). And I was super thin. So I think it’s the wheat, not that’s it’s restrictive.

I also got sick of all the side effects of the various birth control pills I had tried to help manage my PCOS/endometriosis. I couldn’t find a happy medium. My dr. kept suggesting the Nuvaring and finally I gave in. Apparently it has the lowest dose of estrogen (and estrogen has had bad side effects for me). Well, I still felt sick like I had turned green or something during that special time of the month. I remembered that she had told me that she had endometriosis and she wore her Nuvaring continuously and just opted out of the periods. So I tried that last month and it worked.

And I just now realized that for once in my life I haven’t really been craving chocolate. Usually I think about it a lot and go to the drug store to buy different kinds. So that’s interesting. But I still feel rather dry & asexual so I don’t know what i will do in the long run. They can’t seem to offer me any explanations or other alternatives which is annoying. You would think that if they know what hormones you’re lacking and what you have too much of, that it could be easily made up for, but I guess not. Even when I was on the progesterone only pill I had some good side effects: (didn’t feel asexual or numb from the waist down. less facial hair) but the bad side effects of horrible cramping and not being able to cool off all day outweighed the good side effects.

slacking off

Ok, so I’ve been a slacker and haven’t written all summer. Well I was doing pretty well for a while. But then I was at a turning part in my job. (I was at a small realty company not feeling like I had the proper training and making no money.) So I switched to a large real estate company that offered training. Meanwhile I have run out of money and quit going to acupuncture because I can’t even keep up with my bills. I can see that my health has gone downhill some but I am still way better than what I originally was.

I also ran out of my beta blockers for a while and that was crazy. Just about anything could make me cry and I felt really edgy, nervous and like I wanted to punch things. All of this was familiar to me since I used to feel like that before I was ever on the beta blockers. But I had to respect myself for being able to live like that day in & day out for years. It was infuriating to walk up the stairs in my house and have my heart doing 120 and just feel like I needed to take a nap from going up the stairs. So needless to say I am so glad to be back on the beta blockers.

I went back to my dr. that I see from the city healthcare program. And ironically after wasting all of my money the last few years trying to find that special dr. that understood what I was going through, I realized now that I’m on a government program I finally have that dr. Irony. She said that we might be able to look into the permanent options. (No one has ever said that to me.) I told her how my feet are puffy all the time and she said that that is related to the Graves & she mentioned the pretibial myxedema. (No one had ever mentioned that either.) She even talked about getting me in to see a dietician who could navigate my sensitive stomach combined with the blood sugar problems. And she may send me back to an opthalmologist to make sure my eyes are still ok. So I was very pleasantly surprised. All she wanted to talk about was my Graves. Every other dr. I have ever seen has acted like it must not be that big of a deal and they try to make up all of these other possibilities like IBS or fibromyalgia, all the time ignoring the white elephant in the room.

I also in my mind had wanted to ask this dr. if my dryness “down there” could be Sjogrens since I do have a positive ANA. I mentioned the dryness and she asked if my eyes, mouth, and nose were dry. I said yes. So she said she wanted to test for Sjogren’s. Who knows if I have it, but at least she is always trying to figure things out.

the latest appt

at the last appointment, for the first time I really didn’t have much in the way of complaints for her to work on. Maybe that I was emotional but that was about it. Since then, I got super emotional over some jackass and my gland immediately swelled right up again. It looks like I have a double chin and I’m not even chubby really. So I could immediately see that there is a strong connection between controlling your emotions and managing your thyroid. I’m thinking about getting involved in some meditation/buddhist groups here to learn how to keep myself calm even when people hurt my feelings. At least, that’s the goal.

Also at that appt while the needles were in I thought “my acupuncturist has done so much for me. she has given me hope and a better outlook when everything seemed so dark for so long and it felt like there was no end to my problems. what can I do for her?” of course I thought about writing a testimonial. so I told her that on my way out and she just lit up. she was so happy and grateful. I’m thinking because she seems very humble, that she would never ask someone to write one, she just waits for them. and I thought mine would make a difference since it’s for a disease and most of the ones on her website are just for one complaint like headaches. so she said the next appt will be free if I bring it with me. I just really want to spread the word, that even though I still have hard days. and lately I’ve had a rougher time getting up the stairs (but I’ve been forgetting to take my herbs) things are way better and way more manageable than what they were before. it’s lightyears apart.

I also forced myself to run 2 miles a few weeks ago. the last 2 laps were pure agony but it made me feel strong to be able to say I did it.