Hormones going haywire

March 12, 2014

It started like any other day. I ate, read, dressed, ate again. I went to an appointment. And that’s where it started getting weird. A medical practitioner was pushing me to open up about some things that I usually don’t talk about and I got a bit teary. Ok, that’s not too unusual for me. Then I started crying. That’s a bit odd. Then when I left, I sobbed uncontrollably IMG_20140312_153843for a while. That’s completely out of character.

What was going on? I called a friend and we chatted for an hour. Usually I find crying to be cathartic, so after crying and then talking to a close friend, I should have been feeling much better. Instead, I continued to feel overwhelmed, ashamed, and depressed. When I was still feeling that way at 10pm, I knew something was wrong. When I woke up the next day still feeling that way, I knew there was definitely a problem. Luckily, I quickly figured out what it was.

About 8 or 9 years ago, my endocrinologist put me on natural replacement progesterone to help my PCOS (polycystic ovary syndrome.) This worked out fine for a bit, but then about 5 or 6 years ago I started having PMDD (premenstrual dysphoric disorder.) My doctor had me change birth control pills. It took some time, but we finally figured out what worked. Over time that’s changed, and each time I had to deal with a roller coaster of emotions when PMDD reared its ugly head. Most recently we found that taking half a pill of a certain brand was perfect for me, and of course I continued with the progesterone, too.

With all these hormones, you’d think I’d have regular periods, right? Well, I did for a while. But then recently I was only spotting at that time of the month. Then I didn’t get a period at all. Hmm. There are a couple different things that can cause this, and the only way to find out what’s happening without going off my meds is to do a pelvic ultrasound. Obviously, I don’t want that. So I’m took a leap and went off my meds.

The first 7 days were fine. But then on day 8, when I found myself sobbing, I should have known. On day 9 it was obvious. And now, on day 10, I’m doing much better. Then again, I’m in too much pain to be thinking about anything else anyway. And while being so overwhelmed and depressed felt horrible, it’s a relief to know I won’t be feeling that way long term. If it continues, I’ll just go back on the hormones.

I’ve always been so grateful that I don’t have depression as one of the symptoms of my illnesses. There are usually two types of depression, at least that I know of. One type is a physiological matter. Brain chemicals are off, or the cells aren’t absorbing hormones, etc. The second kind is what you’d expect from someone suffering from daily pain, spending days stuck indoors, unable to work, unable to socialize, etc. I do have that second kind sometimes, but it’s not too severe and it doesn’t last too long, usually just for a couple of days when my physical symptoms are at their worst. I’ve been so grateful for that. And then the other day was a reminder of what I could be dealing with.

And that makes me wonder how many people, especially women, are in the same situation I could have been in. How many are put on antidepressants, when some added estrogen is all they need? How many women spend years in therapy without improving, without realizing that their symptoms get worse approximately every 28 days? How many women and men see a psychiatrist when they should be seeing an endocrinologist? Maybe the answer is that only a few are affected this way. Maybe it’s a lot. I have no idea if this has been studied are not. I just know that a lot of patients fall through the cracks in other areas, so it wouldn’t surprise me if it happened here, too.

I have fallen through many, many medical cracks. Anyone following this blog for a while knows a few of them, but I doubt I’ve even covered all of them at this point. For example, a specialist seeing me for something else once suggested I could have PCOS, but wasn’t allowed to treat me for it because of HMO rules. My own doctor didn’t address it. It took another 7 years for me to actually get diagnosed and treated. I’m so glad I didn’t fall through the cracks with the PMDD and depression. I just hope the medical community doesn’t let it happen to others.

2 Comments | Educating, Frustration, Healthcare, Limitations, Medication, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Seeing potential for progress

March 7, 2014

Whether you’re a long-time reader or you’ve only stopped by recently, you’ve probably noticed that I’m on a mission to feel better. I know I’ll never be 100% better, of course, but there’s a lot of room for improvement.

Two years ago, when I had to leave my job due to fatigue, the doctors told me there was nothing they could do to help me. I started doing my own research, searching out new doctors and other practitioners, and changing my diet. I’ve already seen huge improvement, but I also have a long way to go. Sure, I don’t nap anymore, but I sleep 10-11 hours per night and I’m still tired. I’m in more pain than before. My digestive problems are soooo much better, but still not quite right.

Remember how I was dealing with too many doctors and not enough help? Well, I saw one thyroid doctor last week and he actually agreed to keep me on my current med and give me the new one I wanted to try. Unfortunately, it’s been a week and I haven’t noticed any change yet. Still, it’s a start, and I’m on a very low dose. And I’m seeing the other thyroid doctor next week. So I’m keeping my arthritic fingers figuratively crossed and hoping that he has some new ideas.

At the same time, I did some of the testing that the sleep doctor wanted me to do. Some of it came back normal, which is good. Some of it didn’t, though. As it turns out, in addition to circadian rhythm issues, I have a sleeping condition that’s sometimes lumped in with sleep apnea. It’s similar, but different. When the doctor told me about Upper Airway Resistance Syndrome, it described me exactly. When I got home I looked it up and again, it described me exactly. There’s no doubt I have it, now we have to work on treating it. The doctor warned me that the insurance company might not cover treatment, but we’re going to move forward and see what they say. With any luck, I’ll be trying out a sleep apnea machine in a couple of weeks, and I’ll know shortly after that if it’s helping or not. I’m not thrilled about having to use the machine, but if it works, it’ll be worth it!! After all, I’ve given up gluten, most dairy, most eggs, peanuts, and many of my favorite vegetables (broccoli, beets, parsnips, and more) for the sake of my health. This machine wouldn’t be so bad!

There’s no way to know what’s causing my fatigue, but more and more I don’t believe there’s just one cause. The more I think about it, the more I think there are many contributing factors. My energy improved as my adrenals improved. My energy improved and I tried different thyroid medications. And I’m guessing my energy will improve when my sleep disorder is treated. I doubt any one of these things would “fix” my fatigue, but I’m hoping that all of them combined might just do the trick!

So now I’m really excited to try the CPAP machine. I’m excited in a way that healthy people will just never understand. Because maybe, just maybe, this will make me feel better. Maybe, just maybe, this will allow me to socialize more, date more, go back to work, and in general resume my life. Here’s hoping!

8 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The myth of a healthy youth myth

March 4, 2014

I can’t believe I had this conversation again today. The details vary, but it always goes something like this:

Me: I want to get healthy while I’m young enough to enjoy it.

Other person: Well, the “healthy youth” thing is really a myth. Not everyone feels good, and people get sick, and we’re busy taking care of kids so we can’t go out much anyway. And lots of older people feel great and are active, so maybe you’ll be one of those. Besides, we’ll all be feeling like you one day anyway, and then we’ll all be on the same page.

Yes, people really say this shit. Ok, let’s start with the first thing: the healthy youth myth. That myth idea is a myth itself. I’m not saying that people without chronic illnesses are healthy all the time. They might get the flu or headaches or whatever. Some days they just feel like crap. Sure, I get that. But the point is that they recover! They don’t continue to have the flu for the next 30 years.

Next, just because you use your energy-filled, pain-free days to do things other than jet off to Paris and go to fancy clubs, doesn’t mean you aren’t enjoying your youth. Do you have any idea how many of us would like to have kids but don’t have the energy to take care of them? So while you might say you can’t party because you have kids, others of us say we can’t party OR have kids. See the difference?

I’m not suggesting that every 20- and 30-something parties 7 nights a week. But I’m suggesting they can go to parties on Saturday nights. I’m suggesting they can attend a lecture on Tuesday evening. I’m suggesting they can take a shower and cook a meal without feeling like shit.

And yes, some older folks feel good and are active. But if I feel like shit at 30 and 40 and 50 and 60, do you really think I’ll be skiing and skydiving and traveling and going out with friends at 70 and 80? Do you know any of those active elderly? Maybe it’s just a coincidence (I really doubt it) but all of them were healthy active in their youth and in their middle age and then they continued to be active. You can’t expect an unhealthy body to magically get healthier as it ages. The chances that I’ll feel better at 80 than at 30 are really incredibly slim. And besides, at best I could feel good compared to a typical 80-year-old, but I’ll never get the chance to feel as good as a 30-something again!

And sure, maybe one day my friends will all be tired and in pain with arthritis. But they’ll have already had all of the experiences of youth! That’s the point! Yes, maybe one day we’ll all feel equally miserable. (Though to be honest, I think I experienced more pain and fatigue at 32 than my grandparents did when they were 80. At 80 they were still hopping on planes and traveling. Not me. They still went out with friends all the time. Not me. Just saying.) But when we stiffly sit in our chairs with our achy joints at 80, they’ll be surrounded by kids and grandkids if they chose to have them, and they’ll remember all of their fun adventures and activities from when they were younger, while I’ll remember days of my life seemingly wasted sorting through medical records and insurance forms, feeling lousy, watching tv and ready and missing out on parties and outings that I really wanted to attend. Yes, I’ll have fun times to remember, but not as many. Hopefully I’ll have let go of the anger and sadness of not being able to have children, but maybe not.

So to all of you out there who spout the myth of the healthy youth myth, I’m telling you it’s not a myth. Spend just two months pretending you have the flu. Leave your job, turn down every invitation you’re offered, don’t accept invitations. Now tell me if you feel like your old life allows you to be active or not. I’m guessing you’ll feel pretty damn healthy by comparison. If you’re tired because you stayed out at the bar too late, go to sleep earlier next time, but don’t pretend you have it so tough. At least you have a choice.

I was going to give an update today on the doctor planet orbit, but I was too upset. So please accept my rant as just that (a rant), and I’ll resume my normally unscheduled blogging tomorrow.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Feeling jealous and alone

March 3, 2014

I know that jealousy is a useless emotion. I’m already working to change what I can, and a lot is out of my control, so there’s no point in being jealous. Yet I am.

You’d think I’d be jealous of my healthy friends’ good health, but I’m not. Ok, I am a little bit, but for the most part I’m past that. I know that I can’t have that, so I’ve let it go. Sure, I get jealous of their good relationships with their spouses, their kids, their pets – all things I could have but don’t. But what I’m really jealous of is my friend L’s situation.

You see, L also has chronic illnesses. She has chronic pain and other symptoms, so we can really relate to each other. What I’m jealous of is that she’s never had to handle her illness or it’s results alone. She moved in with her then-boyfriend (now-husband) as a teenager, and he’s always been there to take care of her. I, on the other hand, have been alone for the worst of my health problems. My parents were very supportive when I lived with them, and then I had tough years where I could manage alone. And now? Well, now I could move in with my parents if I had to, but for many reasons I’d rather not do that.

I’m lucky. I know I’m lucky. I’m able to live on my own, and that’s huge. And I’ve been able to go to college and work, which L never did because she was much younger when she became disabled. But still, I’m jealous that she has someone to help her out. Her husband earns a very good salary, so she can afford to have someone else do her laundry, to get medical treatments that aren’t covered by insurance like acupuncture and naturopathy, and to get massages, all without worrying about the cost. I either can’t do these things, or I pull money out of savings for them and then stress over them. She gets to have pets. She freely admits that she couldn’t care for them herself, and in addition to loving them, she talks about how much they help her. If you don’t know what I’m talking about, check any search engine and you’ll see the many articles that talk about the physical  and emotional benefits of having pets. I know they’d help me, but I can’t afford them or take care of them. Beyond the money, L has help and support at home. Her husband helps with the chores and does all of the cooking. He comforts her when she feels especially sick. He helps her make decisions about her health. Oh, what I would give to have that.

I was thinking about this today on the way home from the grocery store. I managed to do the shopping ok, but as we all know, it doesn’t end there. I was wondering how I’d manage to get the groceries into the house, and I thought about L, and how her husband carries in the groceries. And after buying everything, I was tired and needed to rest, but dinner still had to be cooked, and I thought about how L’s husband does their cooking. And I thought about how on days like today, when I don’t see anyone else except at the store, and other days when I don’t see anyone at all, it would be so nice to have a spouse come home and have a conversation with me, and give me a hug.

Everyone’s life is different. I know that. I know that I have a lot of things that L doesn’t have. I know I have a lot of things that many other people don’t have. Still, some days I get jealous, and today is one of those days. Some days, I just wish I had someone else to help me through the tough days and celebrate the good days so I wouldn’t feel so responsible for everything, and so alone.

10 Comments | Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Support | Permalink
Posted by chronicrants

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