Why do folks focus on a treatment’s potential problems?

March 19, 2014

I mentioned in my last post that I’m going to start using a CPAP machine soon. It’s used for sleep apnea, which isn’t too uncommon, so most people know someone who has tried one, or have tried one themselves. It was just a small note that had little to do with the main point of my article, but still, I noticed that no one commented on it, even though they commented on other parts of the article. I noticed it because that’s not what’s happened with my in-person interactions lately.

I can’t criticize people for commenting on other’s lives, because I do it too. Actually, I probably do it more than most people. But there’s a big difference between commenting and pointing out the negatives. What’s even worse is that in this case, people are pointing out negatives without offering solutions. So why are they doing this?

For years now I’ve been fatigued. I’m unable to work. I barely date. I miss all sorts of social events. I feel lousy. Now we discover that I have a form of sleep apnea and a CPAP machine could help. There’s no guarantee, of course, but it might help, so why on earth wouldn’t I try it? In fact, I’m excited to try it! That’s why I’ve already mentioned it to quite a few people, and why I’m so annoyed that almost every single time, the response has been to point out potential problems with it. They tell me about a friend who was bothered by the noise, an ex-lover whose skin was irritated by the mask, an acquaintance who got tangled up in the cord. They tell me about these problems and I don’t know why. Are they suggesting that I shouldn’t even try it because one person they know had a problem with it? Are they suggesting that I continue to feel horrible and not even attempt to fix it because I might be inconvenienced?

Well let me tell you, I’m already inconvenienced. A lot. And I’m not about to let worry about some little inconvenience stop me. If that was the case, I wouldn’t have changed my diet and I’d still be feeling nauseated all day every day. If that was the case, I wouldn’t have changed my thyroid medications and found the improvement in energy levels that I have. If that was the case, I never would have done my own medical research. If that was the case, I wouldn’t have improved at all over the last 2+ years.

Today I emailed my family and friends with a health update. I do that occasionally. When I mentioned the CPAP machine, I included this:

“Note: Please do not tell me how terrible CPAP machines are. Just don’t. Almost every person I’ve mentioned this to has told me they don’t work, they’re loud, they’re ugly, they’re uncomfortable, etc. If I had a gas leak, would you tell me not to fix it because of the hassle of calling the gas company? If I had cancer, would you tell me not to get chemo because of the side effects? No? Ok, then please don’t say anything negative about this medical treatment unless you’re also telling me how to fix said problem.”

So far, I have received only positive or neutral feedback. They’ve congratulated me on taking this step. They’ve said that they hope it works. I got one story of a friend who was helped by it. So from now on, when I tell people about the CPAP machine, no matter how well I do or don’t know them, I’ll preface it with that paragraph. It may be rude, but I don’t care. Taking care of my health is the hardest thing I have ever done, or probably will ever do, and I don’t need the “help” of negative feedback from ignorant people.

Oh, and by the way, I’ll get the CPAP machine in just two short days! Yay!

13 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Insensitive, Rants, Symptoms | Permalink
Posted by chronicrants

Life with chronic illness: a bigger suitcase

March 17, 2014

It used to be that when I was going to spend the night someplace, I’d quickly throw some things in a bag and head out the door. Toiletries, change of clothes, a book… I didn’t need much.

Then I started having to add pills. Lots of pills. And a sunlamp. And I still had the clothes, toiletries and book, of course.It 20131202_162116took longer to pack. And I needed a bigger bag.

When I went gluten-free, I had to bring food with me. Leftovers for lunch and dinner. A container of gluten-free oatmeal for lunch. Snacks. Oh, and all of the pills, clothes, toiletries, and a book. And an extra bag and a cooler

Now I’ll be adding something new to the list: a CPAP machine. If it works it’ll be worth it. But it’s heavy. And in addition to the CPAP I still have to bring the food and the pills and the clothes, toiletries, book. Now in addition to the cooler and bag of food, I’ll need a rolling suitcase. For one night. What happens when I go away for longer.

This isn’t the end of the world, but it illustrates my point. Life is hard for everyone. We all worry about our family, our friends, money, jobs, etc. But having a chronic illness means more thinking, more planning, more effort. It means not being able to just throw clothes in a bag and run out the door. It means thinking everything through very carefully. It means considering every angle, every possible outcome, before making a decision.

It means packing a bigger suitcase.

11 Comments | Decisions, Educating, Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

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

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

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