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.

Vanilla Spice Gluten free bars

I took this recipe from the Namaste Foods website and adapted it for my low histamine diet and allergies. I don’t have any dairy allergies so I was happy to use butter and milk. I’d throw nuts in if you can eat them.

Vanilla Spice GF cake bars

1 1/2 cups of Namaste Foods Gluten Free Perfect Bread Flour
1/2 cup oil or butter – I used butter
1/2 cup sugar
1 egg
1/3 cup molasses (I started with a half cup but didn’t fill it up cause I was like OMG SO MUCH MOLASSES)
1/2 cup milk (should be able to use whatever is ok for your diet)
1/2 tsp salt
1 1/2 tsp baking soda
1 tsp vanilla (1 1/2 tsp might work too)
1/2 tsp cardamon

I used a stand mixer and made sure to mix eggs/sugar/butter until it was a little fluffy and then mixed all ingredients together until it looked fluffy and smooth.

Preheat oven to 350.

Use a greased 9X13 pan. 8×11 would probably work too.

Bake 25 minutes or until toothpick inserted comes out clean. I think I gave it an extra 5 minutes.

I call them cake bars because they look like bars/brownies but are much lighter in texture. Also, I thought they tested better once completely cooled.

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.

Anti-inflammatory low histamine diet

Here’s one according to the Dr. Weil guy, I totally picked one because he’s got a fanny pyramid. I detest a lot of diet advice found no the internet because. Often, such advice, like the link I’ve included, makes no mention of how to figure out what is in season. In this decade, just because it’s offered fresh in your local grocery store – if you have one – does not mean that it’s in season. Further, there is no consideration of cost. Organic produce is expensive! I’m not saying do not eat organic. Personally I think I feel better eating organic – and prefer it – but sometimes you have to make choices because of the cost.

Good article about histamine intolerance: Maintz L and Novak N. Histamine and histamine intolerance. Am J Clin Nutr 2007; 85:1185–96.

Let’s work through this from the bottom shall we?

Vegetables
– varies by season and region of the country you live in.
– description suggests money is not an issue here either
– I cannot have tomatoes or spinach.
– I tested allergic to cabbage and have yet to retest this.

Fruits
– again varies by season and region of the country you live in.
– Berries are famous for anti-inflammatory properties. I’m allergic to cherries and all berries are high in histamine.
– Thankfully, apples are easy to get. We’ve kept those on hand through cooler months so far.

Whole and cracked grains
– gluten intolerant
– yeast is to be avoided on low histamine diet
– That being said, pretty easy to handle in dinner.

Pasta
– gluten free pasta is really not as good for you, or as good tasting
– also, why? I guess it’s here for variety?

Beans and Legumes
– this might be the first actually easy thing I’ve seen
– except that since I cannot have vinegar under the low histamine diet I’d have to start cooking beans from scratch DAILY.
– hummus is tricky because I can’t eat the leftovers after 24 hours.
– canned foods not smart on low histamine diet.

Healthy fats
– allergic to tree nuts
cannot tolerate flax or oat
– avocados are high in histamine and a possible migraine trigger. I eat sparingly.
– I eat eggs sparingly because of histamine and cholesterol. I cannot eat the foods that would naturally help to lower cholesterol.

Fish and seafood
– COMPLETELY OUT on low histamine diet and made me very sick before I knew anything about the low histamine diet
– again depends on region of country you live in.

Whole soy foods
– again, why?
– also not recommended on low histamine diet

Cooked Asian mushrooms
– But what about people allergic to fungus? I’m careful with mushroom intake because of my mold/fungus allergies.
– also, this one is interesting. Reason to eat more Shitake mushrooms?

Other sources of protein
– this is probably the only easy thing here.
– Except that I cannot eat any cheese but mozzarella or goat cheese and have to have yogurt sparingly.

Healthy herbs and spices
– what makes them healthy?
– Ginger causes a serious reaction for me and I think it’s part of the low histamine diet
– I don’t tolerate turmeric well.
– Cinnamon gives me bad asthma attacks and it’s not on the low histamine diet.
– Garlic? That one’s ok but you can’t put garlic on everything.

Tea
– Out on the low histamine diet. I save it for days when I need a hot drink only since I’m allergic to coffee. Also, coffee has health benefits…..
– cannot tolerate more than 1 cup of white every few days because of caffeine
– cannot tolerate green or oolong at all

Supplements
– seriously?
– I have yet to find a multivitamin that doesn’t have food sources in that. Spinach is a popular one – which is high in histamine.
– I’m on vitamin D supplements but that’s because my doctor found I’m low on vitamin D. Just recommending a fat soluble substance with no mention of a doctor is NOT smart.

Red Wine
– migraine trigger.
– no alcohol on the low histamine diet

Healthy Sweets such as dark chocolate
– dried fruit is out because of sulfites
– chocolate is high in histamine

So, basically, vegetables and proteins for me, with some fruit thrown in.

Writing and Chronic Illness

I have this thing floating around in the back of my head. I’m trying to figure it out and give it some flesh and blood. What if fibromyalgia is what happens in my life that means I finally take the steps to become a full time writer? (Thankfully I have a supportive spouse in this equation.)

It’s weird because while wondering if my chronic illness is going to make it easier for me to change my life I’m also afraid my chronic illness has trapped me and I won’t be able to change my life.

The trick, I think, is to find a place to start. I’ve realized that writing is like mental exercise. I’ve started exercising at 10 minutes every day or every few days. We’ll play it by ear. I can do the same thing with my writing. To start. Blog posts don’t necessarily count.

I also recently read on the internet that on days you cannot write, you read about writing, or think about writing. I’m hoping this book will help too.

In theory, if the CoQ10 I’m now on seems to be helping my fibro fog. Exercise will also help. So, I just have to think about this like it’s a journey. You have to start someplace.

Tetanus booster shot pics

Just finally cleaned off my old iphone and found the old pictures of my tetanus booster shot reaction. I think I’ll put them here for safe keeping. This was July 2011. Pretty sure my regular doc doesn’t believe me so I can show her pics now.

Earliest pics (?)

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And it took forever to get better:

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Of course I’m also not completely sure I got those in the right order. It may have gotten worse before it got better.

 

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.

Yesterday I had a needle poked in my eye

It was nothing serious!* Two nights ago I got something in my eye. Everyone has done this at least one. Wait a second, I didn’t just get something in my eye I got SOMETHING in my eye. By the end of the night I was pretty sure it was out but my eye HURT. Like I was starting to get a headache it hurt so much. I ended up going to bed and just laying there with my eyes closed instead of doing something interesting like reading before bed.

Yesterday morning the same eye was all red and angry looking, more like I was hung over. Eye seemed better, it wasn’t bad, just a smidge uncomfortable. Fast forward through some drive time and some looking at computer screens time and I’m realizing my eye is really really bothering me. Then I notice the little BUMP on my EYEBALL. So I started to get nervous. I started to wonder if I’d scratched my eye the night before. I ended up calling our eye doctor and getting an appointment in the afternoon. (Husband drove home from work to get me – and then drove me to the appointment. We made it there on time!)

Finally, I’m talking to the eye doctor. I explain everything – with my eyes closed because at this point I’m more comfortable with my eyes closed. (Ophthalmologist.) He also happens to be really nice and really smart. He’s talking to me, and looking at my eyes and first he does the professional doctor speak for HOLY SHIT THE INFLAMMATION. Then finally, he notices the bump that I’m talking about. He explains it’s a cyst (There’s a big word for it I don’t care like googling for right now.) But it has to do with your eyeball healing and then not quite healing correctly and a cyst is formed. The cyst has tears in it. I’m thinking OMG NOTHING SERIOUS!!!!

So the doctor goes on to explain how you can like wait for them to go away or something – or pop them with a needle. I’m like You can do that? Let’s do that! Right now! The doctor was really surprised. So he puts a few drops of stuff in my eye to numb it – immediate relief by the way cause now I can’t feel shit in that eye. He’s also explaining how the only way to get the cyst gone completely for sure is to cut it out – but that involves an operating room and a microscope. I’m like, nope.

So, he tells me to look one direction – which happens to be away from the needle by the way. I make sure I don’t see the needle and I sit with my chin on that thing. You know that thing. Few seconds later. He’s popped the cyst and explaining how I could have bloody tears for awhile and I’m like yea, ok, whatever. (I DON’T CARE YOU REMOVED THE THING!) Then he hands me a tissue for the bloody tears dripping out of the eye I can’t feel. So then – short story version – I tell my doctor to watch the Daniel Craig James Bond movies and also point out there’s a bad guy that has tears of blood in one of them.

On the way out to the car I was telling my husband how the doctor was really surprised that I didn’t mind the needle part. My husband pointed out that well obviously! It’s not often a doctor can make something better immediately for you so when a doctor could fix something you were all for it! I was like, duh. Yea, you’re totally write.

Other happy outcome of eye doctor appointment: he gave me “strong” antihistamine eye drops to try and a prescription for steroid eye drops to help when I have a flare up. I was like wow, that’s a really good idea because when I have a flare up the OTC allergy eye drops work for like an hour.

End result folks? It’s ok to have a professional stick a needle in your eye. If he or she is dressed like a clown? Then run the fuck away!

*Side note: This blog post is brought to you by the letters W and B, for writer’s block. I’m participating in NaNoWriMo but haven’t been able to write today. I finally realized it’s because I have writer’s block!

Why I like Yoga

I’ve started learning about/doing yoga with the help of some DVDs and programs geared towards beginners. Yesterday I worked through the majority of a program currently free if you have Amazon Prime and access to the videos section. I liked this program because it actually named the poses you would be doing and had a specific focus on breathing. I find that I really enjoy yoga for a variety of reasons, but at the same time, it’s very hard to find a program geared toward a true beginner that knows little about yoga. You cannot learn yoga from a book – you need to be able to see the poses in person.

The biggest reason I like yoga is that you use your body and only do what your body is capable of doing. That’s also why I started learning yoga at home with a DVD in my living room instead of finding a class. No pressure! This also makes it easy to set goals. If the first time you can barely hold the pose, then each time after that you try to hold the pose a little longer – or hold the pose at all!

The thing that amazes me about yoga is how it’s different from the general culture of “no pain no gain” of exercise. Pain is bad. ALWAYS. If there is pain, your body will be recovering from something for some amount of time. This obviously varies by person. I do yoga on a mat, in my living room. I don’t run. I don’t lift weights. I don’t do anything that actually feels strenuous. Holding poses is hard, but doesn’t feel strenuous. Yet, as a beginner anyways, I’m definitely using energy, sweating, and burning calories, easily.

Finally, the reason I’m going to continue yoga is because it actually focuses on breathing and so there’s an aspect of relaxation and de-stressing included in my exercise without having to exercise hard and end up out of breath – which I don’t need with my asthma. Even learning about yoga through doing yoga has been enjoyable. I know at some point I will likely seek out a class – but I’m not ready yet.

Acceptance

Accepting the reason you haven’t felt yourself is because you have a chronic illness there is no cure for is…. Difficult.

I’m still working on accepting that I have fibromyalgia and will for the rest of my life. Though I think I’ll start hoping for a miracle cure in the next 20 years.

This last week or so has been full of realizations. All different kinds. I’ve cried a few times too.

1. If I’m having a good day I shouldn’t procrastinate.
2. Now I know why I stopped eating tomato soup.
3. Now I know why I always need to shower after a haircut.
4. It’s ok to admit you’re in pain.
5. Admitting you’re in pain is easier than trying to ignore it.

I’m trying really hard to start good habits now…. And not feel guilty for being horrible to be around cause I wasn’t well before.

Labeling the Pain

Monday – 4 days ago – I had my follow up with the rheumatologist. She diagnosed me with fibromyalgia. She also happened to deliver her diagnosis in a way that you might tell your significant other/partner that someone needs to get milk on the next trip to the grocery store. Other than her somewhat – odd – bedside manner – she’s a great doctor. (I finally know how to spell fibromyalgia. I think. I will by the end of this blog post.)

I have taken time off of work because this has rocked my world and I’ve needed time to process….and because I’ve been kicking my caffeine habit. Sidenote: It’s a little weird that I learn about my caffeine intolerance and start working on kicking the caffeine habit BEFORE I find out about the fibromyalgia and that caffeine is bad for fibromyalgia. Anyways. This is day 6 of no caffeine and the second day of not having a migraine because of eliminating the caffeine.

Looking back, I’m not sure when the pain got bad. I feel like I haven’t been myself for most of the year. But there have been a few periods where I was able to catch my breath and try to get back to normal. Looking back at my blog, April was a VERY bad month and I’m pretty sure January was too. I have had a few realizations this week but, before I get to those…. Fibromyalgia sucks. I sure as hell did not seek the diagnosis out. However, it’s not RA, or Lupus, so things could be worse! On top of that, I’m not really surprised by the diagnosis based on my general sensitivities, intolerances and food allergies.

Most importantly, I now have a label for the pain I have been experiencing for I’m not sure how long, probably close to a year. I have a label for the weird feelings or things I’ve been dealing with for over a year. Like, the days when my clothes hurt…. figured it was my allergies. Nope, it’s my brain!

Because, you see, being able to label the pain I’ve been experiencing means that I can acknowledge the pain exists. I can acknowledge the pain is not going anywhere (that sucks yup. But calling yourself weak because you’re in pain other people don’t experience is worse.). I was consciously ignoring the bad feelings and hoping they would go away. I don’t need to do that. Ignoring the pain and hoping it will go away takes way more energy than accepting the pain is there and not going anywhere. Then instead of spending energy wishing it will magically go away? I can work on making it not as bad.

I’ve done a lot of learning this week. Reading The Spoon Theory was life changing. It’s a great way to explain why some days are great and some days are total shit. You don’t get the same number of spoons every day. I shared it with a friend who has RA and she was surprised how well it applied to life. She also shared with me how she copes with pain. Acknowledging the pain exists means you can put it on the back burner and then move on with life. I like her metaphor too.

Building on her metaphor – I think this applies really well to life. Anyone with chronic pain automatically has one less burner to cook dinner with than someone without chronic pain. The severity of the pain experienced is illustrated by how full that pot on the back burner is. Really bad days means that pot is threatening to boil over, even on a simmer, any minute of the day. Good days mean there’s little threat of the pot to boil over since it’s on a simmer. But, like everyone knows, that is open flame, (we have a gas stove), so you still need to be attentive.

Now where was I? Besides distracted?

All of this has helped my sanity, but it’s not enough. Per my rheumatologist’s recommendation, I’m also trying cymbalta. Hopefully it will my brain. Finding this little bit about chronic pain and the brain helped me figure out more too. I’m still trying to figure out how much exercise is enough and how much is too much. I’ve done some reading so I know I need to start slow.

Last night is the first night of sleep I’ve had since I don’t know when where I actually felt like I got a full night of restful sleep. I’m assuming both eliminating caffeine and adding the cymbalta have helped this. Next thing to do is look up sleep stages. I think I learned about them like 8 years in a PSY 101 class. I should have a review.

Besides the exercising and doing some more learning on my own I have to find a support group. Something where I can see other people, not something online.

I will own my health.

Now I’m going to knit something light weight because my hands are tender.

Why health insurance in the US needs fixed, reason 24664335789

Or, Cigna sucks.

In no particular order:

Points to share in an email to the CEO of the wonderful corporation I’m a fucking team member of….

– Health insurance illustrates a company’s social policy, look to employee policies to see how a corporation really truly feels about the employees
– Employee health – need insurance that doesn’t leave employee’s afraid to go to the doctor
– Since bottom line is so important… Missed work
– Communication with understanding of the employee’s position – not just information providing
– Discrimination against people who have health problems they have no control over – and don’t even mention morale.
– Other human resources policies reflect company’s interest and understanding of employee and family and health – like not being able to carry over much PTO – which is a great way to prepare for maternity leave
– Did you really actually think this insurance change was beneficial to employees? Was research done? Objectively?
– How much was saved in cost for the company by switching insurance?
– Human resources can’t respond to an email in less than a month
– Cigna communication is stressful and patronizing – statement about saving money received same day I get a bill for more than what I saved.

Note to self, you listening self?

So I believe that everything that has happened to me makes me who I am. Everything.

The fact that I had three foster families before age 5 is part of who I am. The fact that I cut myself off and on again for like five years is also part of who I am. These things, respectively, help me appreciate people’s experiences with families and cause me to be more empathetic of the pain caused by internal conflict. Among other things, obviously. Baggage is a bitch but it’s still just baggage.

Therefore, that means food allergies are part of who I am too. Even migraines. Even migraines that last 4 days and rebound on the 5th day.That’s life it’s all or nothing.

But that doesn’t mean I have to listen to the maniacal little voice in the back of my brain that likes to go through what if or worst case scenarios. That just means I have to accept that I have to take the necessary (and healthy) steps towards telling that voice, “shut up bitch, I’m too busy for you!”

Depression

I’ve been feeling like maybe I’m finally kicking the depression that creeped in when I was job searching at the beginning of the year. I need to remember a depression lies…. Even if it’s just seemingly harmless things it whispers… Like you’re too tired to do anything. Maybe I’ll find the energy to start updating this here blog more often – with more than random musings and rambles.

Job helped, obviously. Seeing the Roger Waters concert too. Gaining weight on steroids because of a super bad sinus infection did not help. Neither did our cat dying. Hub getting a raise helps too. Anyways, been lots of back and forth, up and down, with a little sideways these last few months.

When back from Memorial Day weekend I’ll have survived my first 90 days at the job that isn’t my first choice but that I could do much worse than. And I had the idea of investigating whether the company I work for that wants to get more involved in giving back to the community would be interested in awards grants to nonprofits instead of just cutting checks. That could make my job more interesting for what I’m interested and passionate about.

This long weekend should be good for me (us) too. We actually watched a movie last night. And maybe I’ll get around to doing my nails. It is a pretty safe assumption I’ll finish a pair of socks this weekend! I’ll think I’ll start another pair too.

Sick Tea

It’s weird to just have a regular old cold, I’m more familiar with the flu or bronchitis thanks to my asthma (and allergies). Between the bronchitis the end of last year and this week’s cold I have found the tea I like when I’m sick (except for near bed time).

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Both teas are from The Republic of Tea. The “get wellness” tea is a caffeine free herbal tea with herbs popular for immune system support. It tastes spicy, yet.. Fresh. The other tea is a black tea chai. The chai spice accents the spice in the herbal and the spices help with congestion. The caffeine in the black tea also helps to clear that mental fog that always happens with congestion. I steep for 5 minutes so it’s strong enough to taste through congestion.

If you don’t like chai? I’d go with a black tea with some nice malt flavor.

I add vanilla soy milk because I like the addition of the vanilla flavor. I also happen to be lactose intolerant AND dairy adds to mucus. Finally, a spoonful of raw honey from a local honey.

One tea bag of each in a big mug. I’m also a huge fan of an electric kettle for boiling the water.

And I posted this on my ip@d on the couch ’cause I’m lucky enough to have a cold and back spasms at the same time.