So much for “gluten-free”

April 13, 2014

Back in February 2012 I thought I was going to stop eating gluten. As it turns out, what I did was stop intentionally eating gluten. I was still consuming it, though.

In my first year being gluten-free I avoided the obvious sources, like breads and pastas made with wheat flour. I also went online to figure out some of the less obvious sources of gluten to avoid, like soy sauce, lipstick, chocolate, salad dressing, and chicken broth. I found gluten-free versions of all of these, and I thought I was doing pretty well.

Then in the second year, I was horrified to realize how many other sources I hadn’t considered, like sunscreen, hand lotion, cough syrup, lemon juice, cooking spray, vitamins, and dish detergent. Oops!

Now I’m at the start of my third year, and I’m still learning. There are so many areas to consider. Yesterday I reviewed relatives’ recipes they were using for a big family dinner. Hours later it occurred to me: I hadn’t asked about cooking spray. And it’s a good thing I asked, because one person was going to use a type that I couldn’t have. She’s kindly using butter instead.

There are a lot of sources online that list areas to watch out for, but some are incomplete and it’s hard to remember them all. I have a list of food allergies in a Google Drive document so that I can share it with friends when they want to cook for me. I think I’ll make a list of hidden gluten sources on there, too. That way, I won’t have to worry about forgetting to mention something – I can just look at the list!

Where have you found gluten that you hadn’t expected? How have you kept track of all the places it hides?

3 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Rants, Unpredictable | Permalink
Posted by chronicrants

The big medical marijuana problem: paying for it

February 26, 2014

I was going to write about some events that happened yesterday but I’m still too upset, so those will have to wait. Instead, let’s travel back in time to Monday.

As I wrote then, I had a lot to do on Monday, and most of it was health-related. A big item on my list was to make an appointment to get a prescription for medical marijuana. As it turns out, it’s called a certification, not a prescription, but that’s just one of the things I learned.

I had been putting this off. I kept hoping that if one of my new meds worked, then I wouldn’t need medical marijuana for pain very often, or maybe not at all. But it’s been months and the meds haven’t worked. If anything, some of my symptoms have even gotten worse lately. After a horrible bout of pain and nausea the other night, which was only helped by the marijuana I happened to have already, I’d had enough. I finally decided it was worth getting the certification. I won’t use it often, so I considered just buying it off the street, but even from a trusted source, I couldn’t be sure what I’d get. Besides, some strains are better for the treatment of chronic pain, and I’d need to go to a proper provider for that. I got the names of doctors who will write the certification from friends, and was told it would be $200. Oy! And keep in mind, that’s $200 for the certification. I’d still have to buy the marijuana, the vaporizer, and everything else. But what can I do? And I’m already spending so much money on healthcare that isn’t covered by insurance, so what’s a bit more, right?

You might be wondering why it’s so expensive. I’m no expert, but here’s my understanding:

  • Any doctor is allowed to give the certification by law, but most medical centers aren’t comfortable with it and don’t allow their doctors to do it. Also, most doctors don’t have the experience with medical marijuana to make them qualified. After all this isn’t taught in medical schools.
  • The doctors that offer the certifications don’t take health insurance. I’m not sure if this is their choice or the insurance companies’ choice. I’m guessing it’s both.
  • Massachusetts is being very slow to set up medical marijuana dispensaries. They were approved by ballot in November 2012 and we don’t have them yet. In theory, they should be running later this year. That means most people aren’t using medical marijuana yet. So there aren’t as many doctors to offer certifications yet. That lack of competition means that prices can still be high.

So on Monday I picked up the phone to make my calls, and I wasn’t please. One friend told me the place she went was sketchy, and it sounded that way to me, too. That one was $200 for a 1-year certification. The other place seemed more professional and was $250 for the initial visits, with required follow-up visits for recertification every 6 months at a rate of $100 each. I found another online that seems great. That’s $250 for the initial visit and $200 for the recertifications every 6 months. And again, this isn’t for the marijuana, just for the certification so that I can legally buy it.

Those are the numbers, and they really suck. Being sick is expensive. We all know that. But it amazes me just how much of my medical care and treatment isn’t covered by health insurance. This is just one more example. So now I need to decide, should I go to the sketchy place for $200 for the first year, or a more legitimate place for $350-400 for the first year? What lousy choices.

Leave a Comment » | Decisions, Frustration, Gastrointestinal, Healthcare, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Some symptoms I hope to “cure”

September 29, 2013

A couple weeks ago I wrote about wanting to improve my health. I’m hoping to start a new treatment soon, and there’s a good chance it could fix a lot of my symptoms. I don’t know if I’d consider it a cure exactly, but it should help.

The truth is, I can only guess at which symptoms are related to my thyroid condition, so I can’t be sure which could potentially be helped. And then of course, I don’t know how well the medication will work for me. But what gets to me is all the symptoms that could potentially be related to my hypothyroid that I didn’t know about. I figured my fatigue might improve, but by looking at symptom lists and following online patient groups, I’m realizing just how much else could possibly improve. So here’s my list of symptoms that I have reason to believe might improve on the new medication. I sure hope I’m right!

  • Fatigue
  • Joint point (some of my pain mostly likely isn’t related to the thyroid problem, but some of it could be)
  • PCOS
  • Raynaud’s
  • Foggy thinking
  • Pins & needles feeling in various parts of my body
  • Extreme sensitivity to heat and humidity
  • Sensitivity to cold
  • Difficulty regulating body temperature (once hot I stay hot, once cold I stay cold)
  • Dry eyes
  • Feeling like my arms and legs are dead weights
  • High cholesterol
  • High triglycerides
  • Heart palpitations
  • Digestive problems
  • Unusually dry patches of skin
  • Acne
  • Weight instability
  • Fluctuating sex drive
  • Memory troubles
  • Trouble concentrating
  • Tinnitis
  • Low blood pressure
  • Sleep problems

Of course, there are more hypothyroid symptoms. You can find some of them on this list. But these are the ones that I’ve got and that I hope might go away. Can you imagine? I can’t. I’m scared to think it’s even possible. But what if….? What if these went away/improved? What if I got better, even just partially? It could be incredible.

I have to wait several more weeks at least before I can try the new medication, and then it could take months before I know what, if anything, it will fix. But just having hope after so many years of having none is already an amazing gift. I sure hope it works. I hope that at least some of these get better. I’ll let you know soon….

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

You put orange juice in this?!?

May 13, 2013

I appreciate when people try to accommodate my food restrictions. They go out of their way to make sure I can eat their food, and it means a lot.

Unfortunately, some people don’t take it as seriously as they need to.

Here’s the thing: some allergies kill, some don’t. But all allergens need to be avoided.

So sure, eating beets or peanuts won’t kill me. But I’ll be pretty damn miserable for a week or more. I could have increased pain and increased fatigue, and I’ll definitely have all sorts of horrible digestive problems. So even though I’ll survive, that’s still some pretty rotten stuff that I’d rather avoid.

I’ve done pretty well in restaurants. I don’t go out to eat often and when I do, I make sure the waiter really understands my needs. So far, so good. Unfortunately, eating the food that friends and relatives prepare hasn’t gone as well. In fact, I’ve gotten sick several times. There have also been a few near misses.

A good example of a near miss was this weekend. We were having a lovely family meal. B had gone to great effort to prepare everything. He told me all of the ingredients, to be sure I could eat it. It all sounded fine except for one sauce, which he kept separate. I was thrilled. Later, as he was getting it all ready, I asked him again about the ingredients. Again, it sounded fine. Then while we were eating, someone else asked how he made it so they could copy it themselves. He ran through the preparation, and then mentioned what made it so great – the orange juice used at the end. Wait a minute, he didn’t tell me about any orange juice! I froze with food on a fork halfway to my mouth. I must have said something, because everyone looked at me. I’d already eaten several bites. Oh crap. He shook it off with, “It’s only orange juice.” I was horrified! As it turns out, it was a freshly squeezed orange, so I was ok. Store-bought orange juice would have been a problem. But he didn’t know that. He just assumed it was fine for some crazy reason. Or maybe he’d forgotten it earlier and he was trying to cover his tracks. Either way, I was really insulted. Here I thought he cared enough to work around my food allergies, and he’d left out an entire ingredient that didn’t seem important to him. This is the second time he’s done this. Once could have been a fluke, but twice is the start of a pattern that I don’t want to continue. I know he’ll be insulted when I don’t eat his food anymore, but my health is more important then his feelings.

I think that’s the important thing that so many people don’t seem to understand. My health is more important than their feelings. So if they suddenly realize they’ve forgotten to tell me about an ingredient, I’d rather they just say it than to wait and hope it’s ok. That’s happened with others who’ve cooked food that I’ve eaten. And it’s not ok. And if I say I can’t eat it, that’s not a comment on your cooking ability. It’s that I’d rather not spend the night doubled over in pain because I chose to eat something with a peanut sauce in order to keep you happy. Why is this so hard to understand?

Some of these incidents have turned out badly. I’m just thankful this last one was ok. I’m in the middle (or hopefully beyond the middle) of a bad downturn, and it’s kicking my ass. I’m pretty sure that eating the wrong foods right now would be a very, very bad move. Which is why for a while at least, I won’t be eating anyone else’s cooking.

2 Comments | Decisions, Educating, Expectations, Frustration, Gastrointestinal, Kindness, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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