Looking for the pieces of my health puzzle

May 25, 2014

I have great memories of summer vacations in Maine with my family. As a teenager and into adulthood, we shared many wonderful times up there. When the weather was nice, we were constantly outdoors. When it rained, we sat around the dining room table working on jigsaw puzzles. We put together beautiful pictures of ocean views, warm sunsets, and peaceful gardens. Unfortunately, sometimes we reached the end and found that one or more of the pieces were missing. It was frustrating and disappointing to be so close and have no hope of finishing the puzzle.

My health is something like those unfinished puzzles. The difference is, I haven’t given up searching under the furniture and in drawers for the missing pieces yet.

The pieces I’ve found

It’s been a long search for all of those puzzle pieces. We all know some of them: eat healthy, exercise, get lots of sleep. But I’d done all of that and was still so sick. So I did some research and tried new things. Here are the big ones:

  • I went gluten-free.
  • I found a new doctor to treat my thyroid.
  • I changed my thyroid medication.
  • I found a naturopath and began seeing her regularly.
  • I discovered and treated my adrenal insufficiency.
  • I discovered new food intolerances and avoided those foods entirely. My leaky gut healed.
  • I added vitamins and minerals to my pill regimen.
  • I added other supplements as recommended by my naturopath.
  • I began using medical marijuana occasionally.
  • I found a better dose of melatonin and used that regularly.
  • I was diagnosed with a form of sleep apnea and began using a CPAP machine.

I’m sure there are more pieces that I’ve forgotten, but I think these are the big ones. This list sounds straightforward, but it isn’t. It has taken me two and a half years to do all of this. I did the research myself. Except for some of the supplements from my naturopath, every step is one that I researched myself. This was not easy, and at times I felt like giving up, but as I found each piece, I felt slightly better, and that encouraged me to keep searching for more pieces.

The pieces I hope to find

I can’t believe how much better I am feeling now compared to two and a half years ago! There were times when I thought I’d never feel this good again. Still, I’m by no means where I want to be, and I can’t do much more with the pieces I’ve already found. I know I have more pieces still to find.

To be honest, I’m running out of ideas. I have tried almost everything that has been suggested by the books, the websites, and other patients in patient forums. I can feel that at least one piece of the puzzle is still missing. Maybe I’m missing a dozen pieces. There’s no way to know until I try something new. Right now I’m considering doing a genetic test through 23andme. If you’ve done this, I’d love to know what you think of it, either positive or negative, in the comments. I would be looking specifically for a mutation on the MTHFR gene, but of course I would be open to any other useful information I could glean from the test.

Beyond that, I’m feeling stuck. Maybe I’ll try the AIP diet again. Maybe I’ll try a Paleo diet. Maybe I’ll come across something else in my reading. No matter what, I know I’ll keep looking.

My puzzle

We each have our own puzzles. For many of us, the pieces are damaged and will never properly fit together again. I know that will be the case for me. I’m looking for the missing pieces of my puzzle, but I’m under no illusions about the best possible outcome I could achieve. I will always have symptoms. I am just hoping to lessen them.

Your puzzle

I don’t know what your puzzle is. Maybe you’ve found all of your pieces and have fixed them the best that you can. Maybe you’re working on fixing the damaged pieces. Or maybe, like me, you’re still searching for your missing pieces. Whatever the case, I wish you the best of luck to get the best version of your puzzle that you can.

14 Comments | Expectations, Frustration, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

When even birthdays are overwhelming

May 16, 2014

The thing about being single is that I don’t have automatic birthday plans. When I’ve been dating someone, we’d plan a day together. Sometimes I went out with friends, but I always had that default date. But when I’m single, nothing happens for my birthday unless I plan it. Well, a couple years ago friends threw me a surprise party. But most years nothing happens unless I plan it.

I remember one year I gathered a bunch of friends from different social circles and arranged for us all to meet downtown for dim sum in Chinatown, and then to hang out for a while afterwards. That was a nice birthday. I would never plan something so high-energy now. Two years in a row I got friends together for dinners out. These days I’m not so fond of going out at night.

I thought about skipping by birthday this year. After all, I skipped New Year’s Eve, so why not skip my birthday? To be honest, I might have skipped it if it was on a weekday. With all of my friends at work, it would have been the perfect excuse. But with my birthday on a Sunday, it just seemed too depressing. I should really do something, right?

A friend is going to be visiting from out of town. I thought about doing something with just the two of us, but she has to head back home early in the day. I thought about inviting one or two other friends. And then I figured, what the hell, I’ll have a freaking party. Ok, birthday gods, you win!

Of course, I’m not up to anything high-energy. The party was going to be a bbq at my parents’ house while they’re away, but that felt like way too much effort. I wouldn’t have the energy to get the food and be the hostess and celebrate. It was overwhelming just to think about it.

So I downgraded it. Now it’s going to be an afternoon thing. We’ll just hang out. If the weather is nice, people can throw around a frisbee in the yard. If the weather is lousy (or just too warm for me) then we’ll hang out in the house and play board games, which I really love. Food will be simple and easy to prepare in advance: chips and salsa, cheese and crackers. My mother wants me to have a gluten-free cake, but I told her I don’t care about having a cake. The truth is, I’m already overwhelmed at the idea of hosting and celebrating at the same time. Picking up a cake that morning would just be too damn much. And I really don’t care enough to go to all that trouble.

I have a plan. A plan is good. It’s a start. Now I just hope I feel well enough to go through with it that day, and that’s impossible to predict.

3 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

The problem with Facebook when you have a chronic illness

May 13, 2014

Chronic illness affects us all in different ways. 10 years ago I was working, dating, and hanging out with friends. I was almost as active as most of my peers. 2 years ago I only left the house two or three times a week, or sometimes less. Some people are as active as healthy folks. Some people are completely housebound. Some people fall somewhere in between those two extremes. But we all have limits of one kind or another.

There’s a lot of talk in psychological analysis of social media about FOMO, which stands for Fear Of Missing Out. This isn’t a new phenomenon, but it’s more pronounced now that we can regularly see the wonderful and spectacular things our peers are up to on Facebook and other social media platforms. I now see pictures posted by people I would have otherwise lost track of years ago. There are children, pets, vacations, jobs, and so many other activities. There’s the occasional complaint about too much work, kids who aren’t sleeping through the night, or the morning’s commute. And of course there are the political and entertainment postings. That all sounds normal to most people.

The problem is, when you’re already feeling isolated and limited, seeing everyone else’s activities can be a bit jealousy-inducing. I’m happy for my friends. I truly am. But I’m also really jealous.

Worse than the jealousy, though, is having nothing to post yourself besides the generic entertainment and political postings. Sure, some people just read the posts and don’t post their own because they’re too busy, too lazy, or prefer their privacy. That’s just fine. But it feels different when the reason is that you have nothing new to post. No job, no travel, no kids, no relationships, no outings…. nothing. This is FOMO to the extreme, because we don’t just fear missing out; we really are missing out. And it feels like it’s obvious to others that we’re missing out, too.

If you have a chronic illness and are active, you’re probably still missing out on something, and it might feel really obvious to you when you see all of the postings by others. When you’re not leaving the house much or at all, you’re missing out on everything.

This is the point in the post where I’m supposed to tell you that it’s ok. There are more important things in life. It is and there are. But it still sucks. I won’t patronize you or myself by saying that we shouldn’t be upset by this, that there’s no point in comparing ourselves to others, etc. We know this and sometimes it helps and sometimes it doesn’t. Sometimes I read Facebook status updates and just feel happy for my friends. Other times I wish I could have joined friends at a concert or posted my own vacation photos. Sometimes I feel so lonely and isolated that I just avoid social media for a while. But inevitably I return.

I’m not offering a solution. I am only offering this one thing: you’re not the only one who feels this way. You’re not alone. And it’s ok. Go ahead, feel bad about what you’re missing. Then go do something fun for yourself, even if it’s something not considered Facebook-worthy, like watching your favorite movie. I’ll be here watching mine.

4 Comments | Expectations, Frustration, Isolation, Limitations, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

Social Security Disability: a system that makes no sense

May 9, 2014

I’ve really missed writing! Unfortunately, I was busy dealing with a system that just makes no sense at all. That’s right folks, it’s the U.S. Social Security Disability Insurance (SSDI) system!

I had my social security hearing since I last wrote to you. For those not familiar with the process, it works like this: you apply for social security and almost definitely get denied. You appeal, and likely get denied again. You appeal again, and are assigned a hearing before a judge. This process takes more than a year. If the judge rules for you, you get your payments (in my case, not even enough to cover my rent, never mind food, gas, electricity, or medical expenses) and eligibility for Medicare, which isn’t the greatest health insurance, but it’s better than nothing (which is what you might have otherwise, depending on your situation.) If the judge rules against you, you don’t get payments, you don’t get Medicare, and your only options are to either walk away or start the whole thing over again. Ridiculous, right?

Oh, and I forgot to mention: if you don’t show up for any but the most exceptional reasons, the judge automatically rules against you. So if you get hit by a car and end up in the hospital, they’ll let you reschedule (with proof that you were in the hospital.) If you’re just in too much pain to show up, too bad, you lose. I get that they don’t want a bunch of no-shows, but when you’re dealing with ill people, reliability can be a problem. If it weren’t some of us might be, you know, working at jobs. Sure, you can schedule a hearing by phone instead, but that has to be done in advance, and my lawyer and others say it’s better to show up if possible. So if you don’t schedule a phone hearing months in advance, you better show up in person at the right time on the right day. They just give you a time and day, you don’t get to choose it, of course.

Mornings are tough for me. I never schedule anything that involves leaving the house before 11am when I can help it. It’s just too hard to get there on time, and I often feel lousy later on, too. So of course I had to leave at 8:30. Figures. And don’t forget that “not showing up” includes “not showing up on time.” So if you show up late, the judge automatically rules against you. But hey, no pressure.

So for a week I was nervous. I washed my hands more than usual. I tried to avoid being near anyone who seemed the least bit sick. What if I got sick? It’s been a year and a half since I first applied, so starting the application process over again isn’t a good option. Plus, if I didn’t show up for the hearing, my long term disability company (which requires me to apply for SSDI) could cancel my coverage. Yup, missing this hearing would make me screwed!

That wasn’t an option, so on top of the concern about the hearing itself, I had the added stress of worrying that something could happen to make me miss the hearing. And of course the hearing itself would be about me trying to “prove” that I’m really as sick as my doctors and I say I am. It was a shitty week.

But here I am, on the other side of it. I won’t know for a month or two what the judge’s ruling will be, but at least I made it through the hearing. I was nauseated beforehand, I was in extra pain that morning, and I don’t feel great about how it went, but at least it’s over. And now I wait….

5 Comments | Expectations, Fatigue, Frustration, Healthcare, Politics, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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