Is remission possible?

March 28, 2014

I saw my naturopath yesterday and she surprised me with one of her goals. She said that she wants to get me to believe that once I’m better, I’ll stay better, and that I won’t relapse. That had never occurred to me. [As a side note, I’m very impressed that she picked up on this mindset of mine and chose to address it head-on.]

Several friends and family members keep insisting I’ll get better. I keep trying to explain to them that I’ll never be 100% healthy. I’ll always have some symptoms, and I’ll always have these medical conditions. These are lifelong diseases that won’t ever go away, and I’ve accepted that. The best I can hope for is to go into remission, which I’ve never really thought of as a possibility for me, though I know it’s a possibility in general. As for symptoms, my gastrointestinal problems are almost entirely better and my fatigue has been improving, but I think I’ll always be at risk of those returning, and I’ll certainly continue to have pain. Maybe the pain can be reduced, but no one has suggested they’ll be able to get rid of it completely.

I’ve accepted all of that. I’m ok with that. If we could just get rid of my fatigue, I’d be ecstatic! But what my naturopath said really stopped me in my tracks. This whole process has been so traumatic. The symptoms, their impact on my life, the insurance issues, the uncertainty over my future, have all changed me. There are some good changes, like a new appreciation for the little things in life, and a desire to keep my life simple, without the “busyness” that so many people take pride in. I’m glad to have come to these realizations.

But there have also been some bad changes, like more fear. I’m scared to spend money, because what if I can never earn money again? And even if I’m able to work, what if I get sick again and need it for that? I’m scared I’ll never find a life partner who can handle all of my health issues. I’m scared I’ll be a burden on my parents. I’m scared to make plans for anything big (tickets to a show, a small trip out of town, attending a wedding) because what if I have to cancel at the last minute? And if I do get better, what if I get sick again? Will I have the strength to go through this all again. And what if I never improve in the first place?

I think that all of these fears are natural. I also think I have to get rid of them. My naturopath is right: if I’m going to have a goal of feeling X% better, then when I reach that goal, I have to trust that I’ll stay there. I’ll need that mental attitude to propel me forward. Sure, I might have setbacks. In fact, she agreed that I probably will have them. Then medications will be adjusted and I’ll improve. But she thinks there won’t be many and that they’ll be short, just a few days or a few weeks; not months or years.

I want to believe that. I do. Really. But I can’t. Not yet. After the trauma I’ve experienced recently, I’m just not ready. But I’m working on it. I love the idea. I hope she’s right. So when I eventually get a therapist (I started looking for one recently) I think this topic will be at the top of our agenda.

Wondering why I feel good

March 22, 2014

Today is my third good day in a row! The first was actually really great. Sure, I’m still in pain, and I don’t have as much energy as most “healthy” people my age, but I’m still loving how much better I feel! The question is, what’s causing it? I want to know the cause so maybe I can make it last! Here are my current thoughts:

  1. It’s my new medication. I started the new med exactly 3 weeks before my first good day. The problem is, usually good effects are felt within the first few days on this med. The changes are right – it’s my energy that’s improved, and that’s what I’d expect from this med – but the timing is off.
  2. It’s the medication I stopped taking. At my doctor’s suggestion, I stopped taking a medication two and a half weeks ago. Since the new med hadn’t had an effect yet, I wasn’t to worried about doing both so close together. I wouldn’t expect it to have this effect, but maybe it’s an indirect cause.
  3. It’s the supplement I stopped taking. I stopped it about a week ago when I realized my most recent gastrointestinal problems started just after I added in this supplement. Two days later, my gastro problems were mostly gone, and the third day everything was as it should be. That alone wouldn’t make me feel this good (my gastro problems were fixed for months before I started that supplement, and I didn’t feel this good then) but maybe in combination with something else it’s helping.
  4. It’s daylight savings time. I have seasonal affective disorder, so I always get extra happy and more energetic when we have the extra hour of daylight. The thing is, DST started two weeks ago, and I usually feel the effect within the first couple of days.
  5. It’s a fluke. This is an odd coincidence. Usually when I have a random good day it’s just that: one good day. Not three. But maybe this is just a longer fluke.
  6. Maybe it’s something else I haven’t even thought of yet.
  7. Maybe it’s a combination of all of the above.

Some of you might wonder why I’m not considering my new CPAP machine, and that’s because I only started it last night, two days after I started feeling so much better.

Right now, #1 seems the most likely, but the timing of it just doesn’t fit. But maybe there was so much damage done to my cells, that it was just delayed in taking effect. And my doctor did say it could take up to a month. I didn’t believe him based on all of the research I’d done and what other patients said, but maybe he was right. It’s odd that I’d have felt absolutely nothing for the first 3 weeks, though, instead of a more gradual improvement. But nothing else fits as well. It’s probably that with the other things added in. I just really, really, really hope it’s not a fluke! I’m loving this feeling so much, and I don’t want it to go away! I haven’t felt this good in many months, maybe even a year or more. It’s not like I feel “healthy,” but I sure do feel a hell of a lot closer than I did four days ago. I feel like I can do more so I’m trying to do more without overdoing it. I also feel that I’m thinking more clearly, so I’m reading more and getting more out of it. I feel happier, but I guess anyone would if they saw a spark of hope after feeling so sick for so long. Still, I’m just nonstop happy.

I guess there’s only one thing I can do for now: enjoy it while I can! I’m taking walks each day. I spent more time out with friends today than I normally would. I’m still not going to the party tonight that I had already been planning to skip. Right now I feel up to it, but I don’t want to overdo it. I’m reading more. I’m trying to catch up on insurance paperwork. And mostly I’m just appreciating this feeling of being more alert. It’s not perfect, but boy, I’ll take it!

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!

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.

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