Writing exercise: Habitual ritual

I completed the first 4 NaNoWriMo themed Coursera classes from Wesleyan earlier this year. They were super beneficial for me. This is one exercise from the course on setting and description. The instructions were to write about a ritual or routine in specific and significant detail in 500 to 750 words. I wrote mine about a specific type of doctor office visit appointment… getting my Xolair shots.

****

You went around twice before you find an empty space. You park your car, turn it off, take a breath and gather yourself, and leave and lock your car. You walk in the vague direction of the door, there’s no clear path between the cars – both parked and moving. It’s bright and a little too hot.

You pull up and park at the curb. Your travel time was less than 40 minutes; you skipped the construction on the highway. Before you leave the car, you take a breathe and gather yourself. From the curb the door to the office is less than a dozen steps. Immediately inside there is the window with sliding glass with a low counter. You nod in greeting, the woman behind the window slides open the small glass door, greets you, and passes you the clip board. You write your name and today’s date on the appropriate spaces and hand the clipboard back. The woman nods at you and you head on back through the door to the right. There’s a decoration of a smiling yellow face on the door which reminds you of decorations in elementary school.

Walking to the back, you pass a medical assistant and he says hi but nothing more, he’s busy. In the infusion center, not all the chairs are full. You never know if your appointment will be in a crowded room or if it’ll be you and the staff.

The head infusion nurse, Lynn, greets you with a smile, like always. She’s busy starting an IV for the young woman in the first chair. You smile, stopping at hi, while she’s with another patient. There are 8 chairs lined up on the right side, spaced enough for room for nurses to administer to their patients. You pick the third from the front. It’s one of the more comfortable dark red chairs. You place your bottle of water and phone on the table, your bag on the floor at your feet, and dig out your novel. You sit down, trying to get comfortable, for now the book is in your lap. The other older nurse, Kate, comes out from the back room where the wide variety of medicines and supplies are stored. The vials, bags, and syringes. This nurse is somewhat reserved but still friendly.

She greets you, “Good morning! Your Xolair is mixing.”

“Hi! Thanks.”

This means your shots are ready in 10 to 15 minutes. The medicine is thick and they don’t mix it until you arrive. In the meantime she brings you a blood pressure cuff, the small battery powered type that goes on your wrist. You attach the cuff around your left wrist and position your arm. The nurse stands ready to write down your vitals.

“124/76. Pulse 89.” She records the numbers as an alarm starts. The IV medicine for the second patient needs attention and the nurse heads to turn off the alarm. The alarms no longer startle you. Lynn is still busy with the same patient.

You sit quietly. The woman in the first chair is young and on oxygen. A thick book sits in her lap. The second patient is older than you, with her chair reclined. Sleeping perhaps? She’s curled up under a brightly colored fleece blanket. The fourth chair – to your right – makes the small child curled between the chairs even smaller. You don’t know how old he is but he doesn’t talk. He appears engrossed in his game on the tablet. It’s one of those educational games meant for kids to practice identifying words or colors and such. His watchful mother is nearby, periodically scrutinizing her phone.

Lynn is walking toward you with 2 syringes. How did you miss her leaving the room? She pulls up the short stool identical to every other doctor’s office and sits down near you. You sit forward in the chair and turn, offering your right arm first, as she pops the cap off syringe number one. The medicine goes into the back of your upper arm. That soft fleshy bit. Even knowing what to expect, the burning pinch is still a surprise. Now the first syringe is empty and she retrieves the second. This one goes in your left arm. You suck air through your teeth and it makes a hissing noise as she slowly pushes the syringe empty. One arm always seems to hurt more than the other.

“Does it hurt?”

“Just a little. Like usual.”

She nods as she finishes. You look at the clock high on the wall. 11:35. You can leave at 12:05. You must wait, in case this time your body decides the good medicine is bad. There’s almost zero risk though. You sit back, the pain in your arms a vague shadow. You open your book.

****

Reading Supplement Labels: What is suitable for vegetarians?

Over the weekend I had an epiphany of sorts. Or I was kicking myself. One of the two. I make sure I buy supplements with allergy statements on them because supplements with fish or shellfish ingredients can make me very sick – sometimes it sneaks up on you too. (I’m not an average healthy person so I rely on supplements.) It turns out I haven’t looked close enough at every single bottle – every brand – that I’ve purchased. I know that I made an easy/simple mistake. The vigilance required when taking supplements and having to deal with food sensitivities/allergies/intolerances is … inhuman? Scary? Overwhelming? Regardless, I’m still having problems resisting kicking myself over being this stupid.  Anyway.

The biggest thing I’ve fallen for is “suitable for vegetarians.” And as an extension of that trying to determine what omitting details means or needing to know if food allergy label requirements for food also apply to supplements.

Here’s two labels in question. Just the backs of the bottles that have the allergy/safe for statements. I was probably tired or brain fogged or sick when searching for the magnesium and calcium supplements in the pictures. I saw the contains no blank words and figured I was fine because minerals. Also, what does hypoallergenic mean when it doesn’t clearly state it’s free of peanut, tree nut, shellfish or fish?

supplement label examples (2)supplement label examples (1)

The following four labels are exactly what I want to see. They either have a statement showing they are free of the top 8 common food allergies or, in the case of the biotin, say suitable for vegans.

supplement label examples (6)supplement label examples (5)supplement label examples (4)supplement label examples (3)

I’ve searched the FDA website now, with multiple keywords and found nothing helpful. (I started with Google.)

I can’t find a definition of vegetarian or what suitable for vegetarians means. There is also suitable for vegans – that’s much clearer.

This is my (/sarcasm) favorite (/sarcasm) result. I had one result when I searched the FDA’s website for “suitable for vegetarians.”

Other search results:

“Questions and Answers on Dietary Supplements”

Guidance for Industry: A Dietary Supplement Labeling Guide

Guidance for Industry: Current Good Manufacturing Practice in Manufacturing, Packaging, Labeling, or Holding Operations for Dietary Supplements; Small Entity Compliance Guide

And the most important one but I couldn’t find anything that says the Food Allergy regulations apply to supplements….

Food Allergens Guidance Documents & Regulatory Information

I gave up and posted on Twitter and tagged a few different FDA accounts. I’m not expecting a reply, but maybe I’ll get lucky. (I’ll update this post if I do get a reply.)

Don’t do what I did. If you have food allergies or any type of food that makes you horribly sick all the time, read every single label, even if it’s the same brand. In fact, read them twice. And don’t trust “suitable for vegetarians” unless they define what a vegetarian eats and doesn’t eat.

Again: Because of my MCAD/S, MS, and other health problems, I need supplements. And the MCAD/S is also why I have to be so careful with supplements. It’s not a question.

Now I really need to get off the computer and go knit while leaning on a heating pad.

Dealing with Allergies: A list

1. If you’re allergic to a food or substance, then any amount of that food or substance will cause allergy symptoms. Also, anaphylaxis is more than just your face swelling up and or your throat closing up. (TV shows are very bad at presenting food allergies.)

2. It’s possible to have an allergic reaction to food but not be allergic to that food. For example, if you’re (very) allergic to ragweed, you might not be able to eat bananas. Lactose intolerance is not an allergy.

3. Antihistamines work better if you take them before your symptoms start. Some allergy meds might also need a few days before you really feel the full affect.

4. Some supplements or vitamins might help alleviate your allergy symptoms but remember that supplements are not as well regulated as medicine. Vitamin B and vitamin C are some supplements that might help.

5. Antihistamines are safe and there are multiple kinds. If one kind of (OTC) antihistamine doesn’t work for you, try another. If OTC antihistamines don’t help, then see your doctor. If antihistamines make you sleepy, try taking one at bedtime.

6. Your house or apartment might be making your allergies worse. Curtains, carpets, pillows, and beds are all places that can accumulate dust. Even something as simple as changing bed sheets regularly and vacuuming regularly can help ease symptoms. If you think you are allergic to dust, try taking your antihistamine at bedtime.

7. Zantac and other similar medicines are antihistamines. (Prilosec and Nexium are not.)

8. Allergy doctors and immunologist doctors can help you with allergy symptoms. Expect to answer a lot of questions and possibly go through a skin test. The skin test isn’t scary at all. Technology has improved and it’s quick and handled in the doctor’s office.

9. When taking antihistamines remember to stay sufficiently hydrated, especially if you are using decongestants.

10. There are multiple kinds of OTC allergy eye drops. Try to find one that doesn’t not advertise “getting the red out.” Also, see if lubricating eye drops alleviate any of your symptoms.

11. Saving the most important thing for last. If you have ever had trouble breathing after eating a specific food you should go to your doctor. You might need to carry epi-pens. Food allergies are serious business and what you’ve “learned” about food allergies on TV is probably very wrong. Side note: Step 1: Use Epi-pen. Step 2: Go to the ER. Step 3: Don’t die.

Note: This is not medical advice. This includes information that I have learned through years of dealing with allergies and treating my symptoms. I have food allergies, food sensitivities, problems with chemicals, pollen allergies, and sensitivities to other environmental triggers. I am the type of person who carries antihistamines and epi-pens just in case.

Another Immunologist Followup

I love my immunologist because he’s very thorough. I just wish I didn’t have to leave 45 minutes before my appointment time (driving, parking, checking in, etc.).

Had my 6 month followup today. Caught him up on medicines, new diagnoses and stuff. He doesn’t think I have mast cell activation disorder. He agreed with me when I said I don’t think I’m “sick enough.” However, there are milder forms…. so he’s going to think about it when finishing the notes from the visit and stuff.

It’s obvious I need to give the MS meds more time because I cannot definitively say whether or not I feel better. I just know other people have noticed changes that seem to be improvements.

He also recommended I see a dietician, which is cool because it means seeing one who actually has experience dealing with food allergies!

I remembered to grabb a copy of the results I had from a skin test done last year (July 1st). I tested allergic to broccoli, spinach, cherry, grape, almonds, brazil nut and hazel nut. This is also interesting because I *had* reactions to walnut after eating them but didn’t test positive here.

….I need to decide if I want new skin tests done. Problem is I have to go off all antihistamines for 5 days which will probably be migraine triggering all to hell and back – beyond who knows what else. I might try adding foods back into my diet and see how that goes first. I’m not sure how to handle it.

Foods I cannot eat

I’ve decided to make a list of the foods I cannot eat (and things I cannot drink). If it’s here assume I cannot eat even a tiny bit of it.

I have to know every single ingredient of any food I put in my mouth. If I happen to just try a bite of something, I’m risking anything from being sick to my stomach for a few hours to a few days, to not being able to breathe. Not being able to breathe means risking death. Many of the foods listed here are foods I’ve had serious reactions to. If I’ve not had serious reactions to the foods, then eliminating the foods have greatly improved my quality of life.

This is also a work in progress. I’m beginning to feel like diet is not enough to control my symptoms for a variety of reasons. I’m waiting on the LP procedure to determine the MS diagnosis before I go back to my immunologist. Anyways, the list.

  • fish
  • shellfish
  • tree nuts
  • soy
  • artificial colors – especially red40
  • gluten
  • most dairy – I cannot eat aged cheese of any kind – even cheddar
  • cherries
  • blueberries
  • raspberries
  • strawberries
  • vinegar and fermented items – yes, this means basically no condiments
  • tomatoes
  • spinach
  • pumpkin
  • spices – cinnamon especially, but also allspice, cloves, nutmeg, and ginger, also curry and chili powder
  • MSG
  • foods that contain high levels of nitrites – If I eat regular cured bacon, technically I’m risking a migraine.
  • alcohol – I drink some amounts of gluten free beer, apple cider, and mead. Probably about 2 drinks a month? Technically I’m supposed to avoid it completely.
  • preservatives – especially those based of benzoates, BHT is another one. example: I cannot eat Rice Krispies because of the preservative in them.
  • grapes/raisins
  • dates
  • eggplant
  • red beans
  • tea
  • caffeine
  • bananas – recently eating bananas has given me migraines – I’m wondering if it’s because my latex sensitivity has gotten more extreme.
  • sulfites – also used as a basis for preservatives
  • corn – I’ve developed a sensitivity to corn but so far it’s based on the source and how much I eat. That’s how I know it’s a sensitivity. Popcorn at the movie theatre means a stomach ache for two days. Snack bag size of fritos from the machine? Stomach ache for at least a day. Mixed veggies with corn for dinner? No problem I’ve noticed so far.
  • chocolate
  • oat
  • flax

There are a few things that I can eat every now and again if I don’t eat too much. Avocado is one of those. I still eat chocolate but I only get it from one or two sources which I know are allergen free and have very few ingredients. I eat chocolate bars with three ingredients in them.

There are other things I need to be careful with. A big one is leftovers. I cannot eat meat that has been leftover more than 48 hours or I’ll likely end up with a stomach ache.

If you’ve stuck with me so far…. I challenge you. Pick up your bottle of juice, soda, tea, whatever and read the ingredients. If there’s something you don’t understand? Google it. I’ll bet you go get a glass of water afterwards.

This is why I’m actually hoping that the MS diagnosis comes through as a real thing, because then I can go on immune suppressing drugs and maybe, just maybe, my body will calm down and stop treating so many different kinds of food as poison.

If you want more information, including information about histamine intolerance, check this out.

My Vitamin D levels

Last summer my regular doctor – per my request – checked my vitamin levels and found I’m low on vitamin D. Really common vitamin D deficiency symptoms include fatigue and joint pain. These symptoms are hard to separate from fibromyalgia. At that time I increased my vitamin D supplement from 1000 to 2000 units a day. (I also take calcium and magnesium regularly.)

Fast forward to after Daylight Saving Time and the holidays and my pain levels had gone back up and my energy levels had gone back down. Per my request, this time my rheumatologist checked my vitamin D levels. LOW! She gave me a prescription for a weekly dose of 50,000 units. (Unfortunately the pills also have artificial colors which is not good for my low histamine diet but I figure once a week for medicine could be worse.)

I’m two days past the second weekly dose and I’m definitely feeling a difference. I have more brain and less pain. Less fatigue, less cloudiness. This is on top of the 2000 units/daily…. It seems to be working.

Low vitamin D is an easy fix and you don’t need to have a chronic illness to have problems with low vitamin D. I’m lead to believe (I say it this way because I haven’t researched it myself.) that some people just don’t process/absorb vitamin D all that well. This has been a reminder that sometimes the problem can actually be fixed AND easily. It’s such a relief!

I’m also glad this got figured out before the neurologist appointment so I can already know about it.

Epi pens

Did you ever want to know more about epi-pens? Well here’s your chance. This is what comes in the box…along with instructions.

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This is a training device and two epi-pens. Why two? You’re actually supposed to have two in case the first one doesn’t work. Either because if physically doesn’t work in a mechanical fashion or because you need a second injection. They also come in cases.

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There you have a better idea of what a person who carries epi pens actually lugs around. These epi pens happen to be expired. So why haven’t I thrown them out? Because they are good for practicing. Oranges are also good for practicing.

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You should also see the instructions on this one. Pay special attention to step three. It says see emergency medical attention.

Step 1

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Step 2

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See that indent in the orange? See how the epi pen has now been triggered? It comes down like that so there’s no needle sticking out afterwards. It’s also safe to throw away now too.

So there you have it. I really hope I never have to use one of theses. I’ve had at least one allergic reaction where I should have used it but at that time I did not understand how allergic reactions can severely effect your pulse and blood pressure as well as your breathing.

Immunologist visit – case study part 1

Last week I went to a follow up appointment with my immunologist. An immunologist is a bit like an allergy/asthma doctor except they know more about the immune system. My immune system is a special snowflake. This was my first follow up since my doctor said he would do a case study on me – as compared to throwing his hands up in the air and running in fear. I showed him information on histamine intolerance and the low histamine diet.

I waited 30 minutes and the visit with the doctor himself was about an hour and a half long. He took notes on his laptop through most of it. (MacBook Air) We went over a lot of things, including my migraines, asthma, allergies, food sensitivities and how easy (not) it is to be on the low histamine diet.

My biggest complaint for him was probably that I have to adapt the diet to me, there is conflicting sources of information about the diet, and despite my best efforts I can still have pretty bad breakthrough symptoms. Ok, those might happen on days I have chocolate – but there are other days I have chocolate where there are no breakthrough symptoms!

I also seem to be having problems with environmental triggers being worse. I explained some fun that took two days to recover from after sitting for about 20 minutes on my SIL’s couch. Shortness of breath, thrashed sinuses, foggy brain, the works! I’ve also been having problems waking up coughing in the middle of the night, like clockwork. I’ve since figured out that was a combination of two things, which I also told my doctor about. First one: environmental. Because of the fibromyalgia and increased commute times – we’ve gotten lax with vacuuming. You cannot get lax with vacuuming when you have four cats. I vacuumed the bedroom the afternoon of the doctor appointment and no coughing that night. Second thing: likely culprit was PABA in the vitamin b complex I was taking. It’s possible to be allergic to PABA and my breathing difficulties and gastrointestinal issues (I’ll spare the Internet those.) were likely caused by PABA. Especially since the issues got better over the course of 1-5 days after I stopped the supplement.

After discussing with my doctor, I’m going to research which b vitamins are useful for fibromyalgia and just take those specific vitamins instead of taking the lazy complex approach. (I’m already on just riboflavin for my migraines.) My doctor also didn’t have recommendations for me – he suggested I go with what I know my body will accept. Research required.

I kind of wanted steroids to help me get over the (likely) PABA reaction but I also didn’t necessarily want to deal with the side effects. My doctor told me to call if my asthma problems continue – even after I’ve recovered from the PABA reaction. My breathing issues have gotten better since vacuuming the bedroom and just with more time passing but I’m still having weird issues! I’m giving it a little more time and probably still calling the doctor so we can look at my asthma medicine.

Thankfully my allergy medicine seems to be keeping up. My hives seem to be better. It’s been months (?) since I’ve had a breakout. I still need benadryl but it’s as needed – not regularly. Now I need to figure out the eye allergy problems I’ve been having – but I know know if that’s a question for the immunologist or the ophthalmologist.

Doctor told me to come back in six months because I have a lot going on with my migraines. (New patient neurologist visit isn’t for over two months.) I can still call with an update if necessary and I figure I’ll go back sooner if it seems necessary. I did also find out something important – asthma and fibromyalgia should not really effect each other. (Note to self: remember to ask rheumatologist too.)

We’re definitely now going down the path where I have a ton of food allergies/intolerances caused by, at least in part (?) the histamine intolerance. I have no idea if the gluten (and now corn) intolerances are related to the histamine intolerance. My immune system is a special snowflake who is also paranoid. It seems like most of the food allergies I showed positive before are probably false positives. Problem is I might have some false negatives too. I’m still avoiding a lot of foods and paying special attention to the ones that give me acute reactions where I cannot breathe.

I’m just glad I’ve had less problems with face flushing and hives. The face flushing makes me look and feel badly sunburned.

Next steps:

1. Get migraines under control.

2. Clean problem areas of the house more often.

3. Exercise more for the fibromyalgia / asthma.