All rainbowed up and no place to go

June 13, 2014

One thing about chronic illness is that I miss out on a lot of events. You name it, I’ve missed it: weddings, dinners out, birthday celebrations, medical appointments, support groups, parties…. Illness doesn’t discriminate. Sure, when there’s an especially important event, I’ll try to rest up in advance, but it’s not like I always have a choice.

This weekend, I’m wondering if I’ll be attending Pride events. For those who don’t know, LGBT Pride is the biggest holiday2014-06-13 17.03.12 of the year. It’s like queer Christmas, Chanukah, and birthdays all rolled into one. It’s something I look forward to for months. As I type, my fingernails are painted in rainbow colors. My buttons and mardi gras beads are ready. And I’ve been feeling crappy all week. Because my illness doesn’t care about Pride. It just acts up whenever it wants to.

Last year there was a hurricane coming up the coast and a bunch of us went out to the Dyke March anyway in the drenching rains. We got soaked, but we were glad we went. The next day was warm and sunny and the Parade was a ton of Rainfun. As usual, I was too tired to go to any of the parties at night or on Sunday, but that was ok, because I went to my top two choices: the Dyke March and the Pride Parade.

This year it’s raining again. It’s not as bad as last year, but it’s not exactly a light rain, either. Check out the view from my window. If I was having a good day, I’d just suck it up and go. But do I really want to do that when I’m already feeling so crappy? No, not really.

Tomorrow is supposed to be cool but with a very high dew point. Which means I may not feel up to going to the Pride Parade either. Plus, just to add in another obstacle, the closest subway station is under construction so I’d have to do even more walking. Oh yeah, and there’s a 50% chance of rain. Ugh.

So maybe I’ll just go to the party on Sunday. And that would be nice. But that’s not what I really want to do. I want to go to the March tonight and to the Parade tomorrow and I don’t want to have to wait another 12 months for my next chance. Plenty of people will skip out because of the weather and that’s their choice. But it wouldn’t be mine. I’ve gone out to both the March and the Parade in the rain before, and I want to do it again. I want it to be my choice, not my body’s. And that’s why I’m feeling so pissed off right now.

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

In search of chocolate and reasonable customer service

June 3, 2014

The thing about avoiding gluten is that it isn’t always obvious where the gluten is hiding. I do web searches, but often there’s no clear indication about the product I’m searching, or there’s something clear but it’s 5 years old. Sometimes a product is well labeled, but often it isn’t. And that brings me to my two-day search for chocolate chips.

A different cake made by my aunt

A different cake made by my aunt

Chocolate itself usually doesn’t have any gluten-containing ingredients (though there are exceptions.) However, flour is often used on conveyor belts to prevent sticking, and that means that the chocolate isn’t actually gluten-free. If the chocolate package isn’t labeled, then, how do you know? The answer is that you call the company.

I decided not to have a birthday cake this year. Just having a party will be exhausting enough and I didn’t want to have to worry about stopping at the gluten-free bakery that day. I didn’t mind. Well, not too much. Then my aunt offered to bake me a cake! She’s always been so considerate of my food restrictions, and she’s one of the few who I trust to cook or bake for me.

The other day, with my party fast approaching, she emailed me a list of ingredients. She said she wanted to use Ghirardelli chocolate chips. Yum! I could find the info on the web site, so I called the company 6 times and each time I heard the same message about how no one was available and I should leave a voicemail and it would be returned. I left a message, but it was never returned. Not helpful.

With Ghirardelli not an option, my aunt suggested Callebaut. Again, the information I needed wasn’t on the web site. The first time I called, I got a message about how no one was available, etc. I didn’t leave a message. When I called later, I got a human being – success! Or so I thought. She needed a product number. When I said I didn’t have one, she said she couldn’t help me because they have multiple products. I asked her to tell me which of their chocolate chips are gluten-free, even if it’s more than one, and she said she couldn’t do that. Well, I’m not about to spend hours standing in a store aisle calling customer service numbers where I may or may not reach someone and reading off product numbers! That’s a #customerservicefail if I ever heard one!

Finally, my aunt said she could use Nestle, though it wasn’t her first choice. Maybe it wasn’t her first choice, but it sure was my favorite! I didn’t even check the web site this time. When I called I got a human right away. She didn’t transfer me. She apologized for making me wait about a minute while she pulled up the information. Then she read through multiple items and told me not only that they didn’t have any gluten ingredients, but that the equipment did not process wheat products. That was it. Simple. Straightforward. Easy. The way customer service should be.

I get that gluten-free folks, those of us with an actual medical condition and not just the ones doing a fad diet, might not be the most powerful demographic for companies to reach out to, but they still should. If they ignored every small group, they wouldn’t have many customers left. And really, it’s the right thing to do. Anyone should be able to find out if a product contains allergens. I understand that having a product number might be more convenient for them, but it’s just not realistic for customers. And it’s not necessary. If Nestle can be so helpful without a product number, then should the other companies have that same capability?

So it looks like I’ll get my birthday cake, and it won’t make me sick. Too bad it was so hard to get the information I needed to begin with!

11 Comments | Educating, Expectations, Frustration, Gastrointestinal, Insensitive, Limitations, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

Feeling too sick to remember how to feel better

May 30, 2014

If I get a cold, I know what to do. I know to drink decaf tea. I know to eat certain foods. I know which medications to take and when and why. But the second I have a fever, all that good knowledge gets lost somewhere in my brain and I forget what I’m supposed to do. When I talk to a friend or my mom, though, they remind me. Too bad they don’t know what to suggest for my extreme fatigue.

Even in my lousy state, I knew it started with all of the extra activity on Saturday. I did a lot that day, moving and being alert almost nonstop from 7am to 3pm, and I assumed that was the cause. Or maybe I ate something I shouldn’t have when I went out to lunch on Saturday. I was careful, but you never know. In the haze, I knew I shouldn’t push myself. I watched a lot of tv, read, watched movies, read, watched more tv, and read some more. I left the house for groceries and for a medical appointment, and felt much worse after each outing. It bothered me so much that no one knew why this was happening.

Except someone did. I did. Or I would have, if only I could have thought clearly. I knew I wasn’t thinking clearly. I knew there was a metaphorical strip of gauze over my brain, obscuring the information inside. Thank goodness I was able to peak under the gauze for just a moment last night. That changed everything.

Last night it occurred to me that I could take an Isocort tablet. Isocort is a supplement that can be used to help treat less severe adrenal insufficiency. At one point I was taking 5 tablets. When I eventually weaned off of it, my naturopath told me to take it occasionally as needed (and we discussed what “as needed” meant.) Thankfully, I had a fair amount left, since it’s since been discontinued. I almost never take it, but last night it occurred to me that I should. However, even in my poor cognitive state, I knew better than to take it at night. Thankfully, I knew enough to take it out and leave it with my other pills where I wouldn’t miss it.

This morning I wanted to try getting by without the Isocort. Ah, what a state I was in to think that could happen. I finally took one tablet around 1pm, knowing I still had time to take more in the afternoon if I needed to. I didn’t need to. By 3pm I was feeling much better, and at 3:30 I went out for a short walk. It felt so good!

More than the physical improvement was the cognitive improvement. The gauze lifted, and it all made sense. I should have taken Isocort preventatively on Saturday. I’ll do that the next time I’m in a similar situation. I overdid things on Saturday and that caused my adrenal gland to go on vacation for a bit. While it was lying on a beach in Malibu, I was suffering. Taking an Isocort or two on Sunday would have helped me to recover more quickly. Resting so much was the right thing to do, but I needed to support my adrenal glands also. Without that support, they weren’t about to return from their peaceful vacation away from my overwrought body. And of course, each extra bit of activity, each outing, only made me feel worse as my adrenals retreated even further.

Today is Friday. It took four days for me to realize that Saturday’s activities were the trigger to my recent downturn. It took another day to realize what I should do about it. And it wasn’t until I felt better that I figured out what really happened. So the question is, what do I do differently next time? Obviously I should take preventative measures, but usually I don’t know I’ll need to. By the time I would figure it out, I’m no longer thinking clearly enough to do it. I can write down a list of things to do the next time I feel fatigued, but that only works if I remember to look at the list. I don’t think I can trust myself, so I’ll do the only other thing I can think of: I’ll tell my parents and a few close friends what to suggest the next time I tell them I’m fatigued. With any luck, at least one of them will suggest the right thing and I’ll take that advice. But if I don’t, and if I write again about a downturn involving fatigue, I hope one of you will point me back to this post!

6 Comments | Educating, Fatigue, Frustration, Isolation, Limitations, Medication, Rants, Support, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

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

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