I’m no scientist but you can look it up yourself

September 11, 2013

A few months ago I wrote about how annoying and ridiculous it is when people ask me why my body works the way it does. Well, I think it’s even more annoying and ridiculous when people ask me why certain foods contain gluten.

I’m not kidding. This happens all the time. I have no idea why. A friend who’s vegetarian won’t eat marshmallows. She told me there’s animal fat or something in it (I forget exactly what.) I accepted it. I didn’t ask why they use those fats in marshmallows. And yet, people ask me about gluten constantly.

Last week, for example, I went to a small gathering with friends. As usual, M cooked. As usual, I brought my own food. M reviewed what was in the food for the sake of the others, then mentioned how glad she was that I bring my own food, just in case. I’m glad she appreciates it!

Later we were talking about the food, and I took some of the plain steamed veggies. I mentioned how they were the only thing of hers I could eat. M pointed out that I could eat the mashed potatoes, but I pointed out that she’d said earlier it had vegetable broth in it, and that store-bought broth almost always has gluten. She was surprised. Then, I kid you not, M’s wife looked right at me and asked, “Why do they put gluten in broth?” I told her I didn’t know and quickly changed the subject. I mean, I didn’t make the broth! How the hell should I know why gluten is in it? Why should I care? And yet people ask me that all the time! Like a couple weeks ago when I said I couldn’t eat Chinese food because of the soy sauce, and my friend asked me why there’s gluten in soy sauce. Again, how the hell should I know?

 

So to be clear, I don’t give a flying fuck why there’s gluten in broth, soy sauce, some vinegars, salad dressings, or a bunch of other unexpected places. I just know there is. I just know what I need to avoid in order to protect my health. What’s important is that gluten can trigger an autoimmune response, which is why I spend extra time and effort to buy gluten-free versions. I just barely know what it does to my body. I don’t know or care what it does to food. So if you care, you can go find out for yourself.

And that will be my response from now on. The next time someone asks me why a food contains gluten, what it’s purpose is, I will tell them that I’m no scientist, but they are welcome to look it up and let me know. Then I will walk away. It’s just not worth my limited energy to deal with those absurd questions.


What do I do all day without a “job”?

September 7, 2013

I have been asked over and over again what I do with my days since I don’t “work.” I understand where they’re coming from. I guess I used to wonder the same kinds of things. Now I realize how absurd that is.

First of all, I do work. I have a job: my health. I don’t get paid for it, but it’s my job. And it’s harder than any paid work I’ve ever done.

Several years ago I quit a job where I was unhappy. Suddenly I had so much free time! I learned new skills, Atlanticimproved my diet, got into a good exercise routine, went out many nights with friends, spent more time with family, traveled… it was a great time and I hated to go back to work. The thing is, I felt good then.

It’s not like that now. Now, I can’t do half of what I did then in a day. Now, I have to rest a whole lot more. I spend more time in bed. I read more. I want to go out but can’t. I spend huge amounts of time planning out my meals, pills, and other health-related stuff. And that’s before we talk about the paperwork.

Right now I’m hiding from the work. I’m writing here because the rest is too overwhelming. I should really be doing one of these (though some can only be done on weekdays):

  • Reading one of the five library books I have out on hypothyroidism.
  • Filling out one of the two forms that the long term disability insurance company sent me.
  • Contacting my lawyer about the next steps in the long term disability insurance application.
  • Trying again to fix a dental insurance status issue.
  • Figuring out if a medical appointment I had last month will be covered by my current or my old health insurance.
  • Filling a prescription.
  • Making an appointment with a new primary care physician (pcp).
  • Changing my health insurance over to a new pcp.
  • Making an appointment with a resident in the new pcp’s office so that I can get referrals for specialists with whom I already have appointments, since I’ll need the referrals before I’m able to see the pcp.
  • Entering recent lab results into my tracking spreadsheet.
  • Creating a new tracking spreadsheet for daily symptoms.

Of course, in addition to paperwork, I also spend a lot of time and energy around food. I have to figure out what to eat that fits in my diet, 20120917_181648what I’m able to prepare given the weather (I can’t use the oven all summer and I can’t use the stove on the really hot days,) and how to time my meals. Today I’m supposed to have lunch with my parents, but they want to eat around 1:30. That would mean I wouldn’t take my lunch pills until 2, and then I’d need to wait an hour before I could take my 2pm pills, so they’d have to wait until 3pm. That’s no good. So I have to eat earlier on my own. And of course, that doesn’t even include the time spent taking pills. Then there’s the 20-30 minutes I spend each week preparing my pills by filling my weekly pill boxes. Buying the pills also takes time, but that feels like a whole different level.

There’s always more reading and research to be done. I follow patient groups online, a few useful blogs, twitter, and I also read books from the library.

Up to now I’ve been talking about the health-related work. There’s still the everyday work. Cooking, dishes, and laundry exist in my world just like they exist in a “healthy” person’s world, but they take a lot more energy for me. Doing laundry and going grocery shopping in the same day means I can’t do anything else that takes much energy, and some days I can’t even do that much. Going out with friends means I have to rest the next day. For me, “rest” usually means not leaving my apartment. I stay home and read a lot. I watch some tv. I check Facebook. But I don’t go out or do anything strenuous at home.

And by the way, don’t forget that I spend 10-11 hours in bed each night. I figure this isn’t too bad, since I know people with similar conditions often spend many more hours in bed. Still, when you compare this to others my age who only spend 7-8 hours in bed each night, you can see that I lose 2-4 hours of “productive” time each day. I also need to rest after each meal. I’ve learned that if I eat and then immediately try to do something heroic, like put the dishes in the sink, I feel really horrible. Instead, I sit for at least half an hour after each meal. I use that time to watch tv and knit. It’s not exciting, but it works.

Then there are the medical appointments. Some weeks I don’t have any, others I have more than one. They are exhausting. They are physically tiring and emotionally wearing and I have no choice but to go to them. I also leave the house for errands, because even ill people need to buy groceries and toilet paper. On a really good day, I take a 10-20 minute walk. I wish I could do that every day.

Like others, I have hobbies. I would like to spend more time on them. But they require energy, even just small amounts. Most days I have to choose between my hobbies and doing my physical therapy exercises. Given that choice, I have to do the physical therapy. There’s a project I haven’t been able to work on in several months because I just don’t have the time and energy to do it.

Finally, I do want to have a social life. I can’t do it often, but I socialize when I can. I spend time with my friends. I spend time with my family. I occasionally go to events. When there’s the chance, I date. But I can only do one big thing per weekend (I may not be working, but they are, so these things are always on weekends.) That means my calendar is already booked into October. If I go to a wedding on a Sunday, I know I can’t do anything the day before. If I go on a picnic on a Saturday, I know I’ll be resting on Sunday. This is incredibly limiting, but I have no choice. I’m just thankful if I can go to those events; very often I can’t.

No wonder I haven’t had the time to buy new glasses. I’m too busy not “working” at a “job.”

If you can relate to this, please pass it around to your friends and on social media. I’d love to help more people understand that not having a paying “job” doesn’t mean we’re not working.


30 Things About My Invisible Illness You May Not Know

September 3, 2013

Invisible Illness Week is coming up soon, and as part of that I’ve decided to participate in the 30 Things About My Invisible Illness You May Not Know. Before I looked at the list I figured this would be good for new readers, but as I read through the insightful items, I realize long-time readers might learn something new, too. So here we go….

Maine

1. The illness I live with is: Undifferentiated Connective Tissue Disease, Hashimoto’s Disease, Hypothyroid, Mild Adrenal Fatigue, PCOS, IBS, Raynaud’s
2. I was diagnosed with it in the year: In the order I listed them, 2003, 2010, 2004, 2012, 2005, 2001, 2004
3. But I had symptoms since: 1993, 2000, 2000, 2011, 1995, 1994, 1994
4. The biggest adjustment I’ve had to make is: Missing out on life – missing social events, spending less time with friends, less dating, having to leave my job
5. Most people assume: I’m a typical, healthy 30-something
6. The hardest part about mornings are: Becoming awake. Sometimes my body wants to stay asleep.
7. My favorite medical TV show is: None at the moment.
8. A gadget I couldn’t live without is: My laptop. It is my connection to family and friends when I can’t leave the house, not to mention a great source of medical information.
9. The hardest part about nights are: The lonliness
10. Each day I take __ pills & vitamins. (No comments, please) 47
11. Regarding alternative treatments I: I do what works and avoid what doesn’t work.
12. If I had to choose between an invisible illness or visible I would choose: I’ve never had a visible illness, so I can’t fairly answer that.
13. Regarding working and career: I wish I had the option of working right now.
14. People would be surprised to know: I’m in pain every single day.
15. The hardest thing to accept about my new reality has been: I don’t know how I’ll feel 1 year, 3 years, 20 years from now. I could be better, could be worse, but I can’t know.
16. Something I never thought I could do with my illness that I did was: Go on a picnic without fear about the lack of bathrooms.
17. The commercials about my illness: Don’t exist.
18. Something I really miss doing since I was diagnosed is: Riding a bicycle.
19. It was really hard to have to give up: Dreams of having children.
20. A new hobby I have taken up since my diagnosis is: Knitting. The movement keeps my finger joints looser.
21. If I could have one day of feeling normal again I would: Have a huge party with everyone I love, and be with them the entire day without having to stop and rest.
22. My illness has taught me: To appreciate the things that I do have.
23. Want to know a secret? One thing people say that gets under my skin is: “I could never give up gluten/dairy/other food.”
24. But I love it when people: Offer to make plans accessible for me, without making a huge deal about it.
25. My favorite motto, scripture, quote that gets me through tough times is: “I may not be there yet, but I’m closer than I was yesterday.”
26. When someone is diagnosed I’d like to tell them: “Don’t rush to accept this. You’ll accept it in your own time. It might take a while, but you’ll get there. Just take it one day at a time.”
27. Something that has surprised me about living with an illness is: My new “normal” feels so natural sometimes, until I realize how far off I am from where I should be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me but without discussing how lousy I felt; we just talked and it was a great distraction.
29. I’m involved with Invisible Illness Week because: I think it’s incredibly important to educate people about what we live with.
30. The fact that you read this list makes me feel: Cared about.


How much do people really want to know?

September 1, 2013

I never know how much to share. Do you? When someone asks, “How are you?” sometimes they really want to know and sometimes they don’t. But most of the time they don’t want a 20 minute answer, so it’s easy to keep things short. So who does want the 20 minute answer?

The other night a close friend was asking me for details on my treatment plan. It’s been many years since I’ve had a plan, so having one is really exciting. There’s no guarantee it’ll work, but it’s wonderful to have actions I can take. The thing is, she’s not the first to ask about it. It’s sort of long, and I’m tired of explaining it. So I was thinking I’d send a mass email to everyone.

A great passive way to share this kind of info is with a blog. But I don’t want to start a blog about my treatments. First, I’m way too private for that. Second, I’m already running two blogs, and that’s already more than enough. I could do it on here but this is anonymous, and most of my friends and family don’t know I’m writing at all, much less have the site address. So even though blogs seem to work well for several of my friends to spread health updates, it’s not for me.

I figured email is the next best thing. I started the email by telling people I won’t be offended if they ignore it. It’s only for the people who want to read it. I also told them that if they don’t read it, they can’t expect me to repeat it all later. I hate to clutter up people’s inboxes, but the whole point of this is to just say it once. So I deliberated, then sent it to everyone. I kept it straightforward. It’s detailed enough to be clear, but I avoided technical, medical terms so that I wouldn’t confuse anyone. I laid it out in stages, so it’s clear what I’m trying first, second, third, and why.

So far so good. I’ve gotten several responses, which is more than I expected on the Sunday afternoon of a long weekend. So I think I did this right. I think people are glad to be getting updates. And if not? Well, they can ignore the email.

I don’t have a crystal ball. I don’t know how much info people want. But I know how much I want to give, so I’m going with that. As usual, I’m letting my instinct be my guide. The worst that could happen is I share too much, and it’s not like I’ve never done that before!


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