Category: Allergies

Chronic Illness: What’s in the Bag?

A popular topic of conversation on Disability Twitter is what we carry with us when we leave our homes to help manage our conditions. Recently, my cousin asked me the same question, so I thought I’d show you all what I take with me whenever I leave my house.

[Note: I try to find small containers to use inside my bag/pack whenever possible, because ounces become pounds when you’re carrying a bag/pack for a long time.]

Safe soap. I repurposed a small spray cylinder by emptying it, cleaning it, and filling it with a soap that is safe for me to use. I react to the commercial soaps available in public bathrooms, so carrying my own soap with me allows me to wash my hands when I’m away from home.

Alcohol wipes. These have a multitude of uses, including sanitizing my hands and inhaling the vapors as an anti-nausea technique. Since I am allergic to hand sanitizer, this is what I use as an antiseptic. They’re also useful for cleaning my hands/face when I have been exposed to an allergen.

Water bottle. I actually carry two. An 800ml (27 ounce) bottle filled with filtered water for drinking, and a 12 ounce bottle filled with 8 ounces of filtered water for mixing with a medicine that requires diluting. [An 8 ounce water bottle would be more efficient and take up less room, but I couldn’t find one.]

Tissues. For runny noses, etc.

Lip balm. For dry lips.

Sunscreen. A small container of safe unscented sunscreen, meaning I don’t react to any of the ingredients. I use a mineral/barrier sunscreen for my face.

Foam ear plugs. Good for loud movies, etc. I keep a pair in a purpose-built container My Boomer Parent got at an air show. You could find something similar online. Ear plug holders are also often available at military uniform stores.

Rescue medicines. I always have migraine rescue medicines in my bag in case I have a migraine flare while I am out. I also carry Epi-Pens with me due to the risk of an anaphylactic reaction that comes with my MCAS (Mast Cell Activation Syndrome.) Additionally, I always carry Benadryl liquid-gels to treat mast cell reactions.

I wanted other people to be able to easily find my Epi-Pens in an emergency, so I found this clear case online and added a sticker I also found online.

Daily medicines. If I’m going to be gone during a time I need to take my daily medications, I make sure I have them with me. If there is any chance I might be delayed and be out when I am due to take my evening meds, I take a dose of them with me.

OTC (over the counter) medicines. The basics: NSAID; pain reliever; antacid.

Safe snacks. I carry raw almonds because they are good for a long time and don’t have to be temperature-controlled. A protein snack helps when I am getting a migraine flare. If I’m going to be gone all day, I’ll often take an RxBar as well. The carbs give me an energy boost.

Electrolytes. I often find that taking electrolytes helps reduce a migraine flare or mast cell symptoms. I prefer a brand that comes in capsules, which I can easily wash down with water. No muss, no fuss.

Ink pen. I carry an ink pen with me that has a grip that I can comfortably use.

Small notepad. So I can write things down, because my memory’s not as good as it used to be.

Sunglasses. A necessity for migraineurs.

Face mask. I carried (and used) face masks long before the pandemic, to help avoid inhaling fragrances. I use a cloth N-95 mask.

Cefaly. If I’m going to be gone all day, I take my Cefaly device with me in case I experience a migraine flare. This device stimulates the vagus nerve and helps reduce or eliminate migraine pain. I have a Cefaly Dual, which is much smaller than the original. It’s easy to take it with me in its protective case.

The Basics: phone; wallet; keys

{I would have included more pictures, but Word Press wouldn’t upload more than one for some reason.]

What do you take with you when you leave the house?

Standing By to Stand By (And What It’s Like to Do a Spirometry Test)

I saw the specialist at a leading institution last week.  (Not the doctor in the picture, who is a random allergist/immunologist.)  It went about as well as can be expected.  But I don’t have any answers yet.

The specialist sent me for more testing.  More blood samples.  More urine samples.  (This will be my third 24-hr urine collection.)  Some tests are repeats (for verification).  Others are new.  One of the blood sample vials went directly into a bag filled with ice, since the component being examined is highly heat-sensitive.  First time I’ve seen that.

While I was at the leading institution, I also had a spirometry test.  This test measures how well your lungs are working.  It measures how much air you inhale and exhale, and how quickly you exhale.

I didn’t quite grasp how the test was supposed to work at first.  The assistant handed me a nose pincer that looked like two ear plugs on the ends of a clamp.

These are used to keep any air from escaping through your nose.

Then the assistant handed me the hose (with attached mouthpiece).

(I did not get to look at the display as the person in this image is doing.)

I was told to put the nose pincers on my nose, get a good seal on the mouthpiece, and exhale for 6 seconds.  This is the part that I did not understand.

I thought that if I needed to exhale for 6 seconds, I needed to pace myself. So I was gradually exhaling.  Apparently this is incorrect, because the test also measures how quickly you exhale, and I was told to exhale as hard as I could.

The assistant guided me through breathing “normally” through the mouthpiece for several cycles, then told me to take a deep breath, exhale hard, and keep exhaling until I was told to stop.

After a forceful exhalation, I didn’t feel like I had enough air left in my lungs to keep exhaling for 6 seconds, which is what I told the assistant.

I was told to keep a good seal with the mouthpiece and keep exhaling until told to stop, regardless of whether I felt anything was coming out.

We needed 3 good cycles of measurement.

On the first cycle, I exhaled hard and exhaled some phlegm.  I tried to keep exhaling without sliming their machine.  This may have compromised my performance.  (Didn’t mention this to the assistant.)  (Mouthpieces are sanitary, and are swapped out between patients, in case you were wondering.)

On the second and third cycles, I exhaled hard, and then felt like I ran out of air quickly.  I gave my best effort at exhaling for the entire 6 seconds, as the assistant was shouting, “Keep exhaling!  Keep exhaling!”  But I felt like no air was coming out.

Also, the nose pincers were sliding around on my nose, and I was concerned they would slide off, which was distracting.

Overall, the test was not difficult, nor was it painful or uncomfortable in any way.  You just sit in a chair and blow into a tube.  It is not difficult to inhale or exhale through the device.  It does not constrict your breathing.

But I thought I had failed the test.  I thought I should have been able to exhale noticeably the entire time.

Imagine my surprise when I was told that my “expiration” was better than normal!

This means that I probably do not have asthma, COPD, or other breathing conditions.  (I was not expecting to have any of these conditions, although it could have been possible to have allergy-related asthma.)

So today I am doing the 24-hr urine collection, and waiting.

I have a follow-up with the “expert” specialist in 8 weeks.

The specialist also gave me a prescription for another medicine to add to the ones I’m already taking.  If Tricare will approve the prescription, I can see how that works, and report back to the specialist at the follow-up appointment.

Bottom line: Saw the specialist.  Was told my hypothesis was worth exploring.  Was also told my symptoms are very difficult to diagnose, and we may never reach a diagnosis.  But the specialist is interested in helping me improve my quality of life.  The tests that were ordered make sense for an exploration of my hypothesis, and so does the new prescription.  The specialist was knowledgeable and empathetic.

So I am currently standing by to stand by.

Stay Tuned (We’re Going to Learn about Immunology)

I am scheduled to meet with an allergy and immunology specialist at a leading institution in one week (26 May).

Ever since the pre-op allergic reaction, I have been having continuing and strong allergic and allergic-type reactions.*  The distinction between the two (as I understand it) is that an allergic reaction occurs when your body produces Immunoglobulin E (IgE) antibodies to a substance.  These IgE antibodies trigger a reactive response to the substance, the symptoms of which we recognize as allergic symptoms.  An “allergic-type” reaction occurs when your body does not produce IgE antibodies to a substance, but your body reacts to the substance with the same type of symptoms (hives, trouble breathing, GI reactions, etc.).

So far, my allergy testing has revealed actual allergies to only two types of common mold and one type of food.  (Oh, and the obvious allergy to Chlorhexidine, which was real-world tested!)  But I am reacting to many foods, most things that contact my skin (plants, shampoo, bandages, etc.), and things I inhale – especially fragrances.  I frequently have to leave doctors’ waiting rooms and wait outside because I am reacting to a fragrance that someone is wearing.

I’ve had 2 allergists (and 2 dermatologists) shrug and say they don’t know what is wrong with me.  So now I’m going to see a more “expert” specialist, and see if s/he can figure it out.

*To be more accurate, I have been having reactions to mold for over 15 years – I just didn’t know they were allergic reactions.  When I mentioned my symptoms to doctors, they dismissed them, because the symptoms were not consistent with my primary diagnosis: Chronic Migraine.  Since the surgery, I have been having strong skin reactions as well, which are new for me.

Stay tuned, as I (hopefully) learn why my body is hypersensitive, and what I can do about it.