Letter To People who are NOT struggling with Chronic Pain

From http://www.painexhibit.com/ag213_Collen

Well, I've been absent from this blog for a LONG time.  In fact, I haven't posted since before Halloween.  And now we've celebrated Thanksgiving, Christmas, and New Years Day.  But I decided not to apologize this time.  I couldn't really help it.  I've been ill, and I've been trying to post a bit on my new Lyme blog as well.

In a Chronic Pain forum that I participate in from time to time, there is a reporter who is asking to interview people about their daily lives with chronic pain.   I have emailed her indicating my willingness to discuss my own life and my challenges.

Of course, I do wish each of you a Happy and Healthy New Year, and hope that you do NOT have to deal with chronic illness or chronic pain.

But this reporter brought to mind a letter that has been circulating in email and posted various forums for some time; the author is unknown.  I'm posting it here because it really tells it like it is; it is truly worth reading:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little bit about chronic pain and its effects, and of those that think they know something, many are actually misinformed.

In the spirit of informing those of you who wish to understand...these are the things that I would like you to understand about me before you judge me.

Please understand that being sick does not mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me — stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn't mean I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But your looking so healthy!”... I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you’re either flat on your back or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest, most frustrating, components of chronic pain.

Please repeat the above paragraph substituting, “sit up”, “walk”, “think”, “concentrate”, “be sociable”, and so on, for the phrase "stand up"...it applies to everything. That is what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in/take these pills *now*, that probably means that I have to do it right NOW - it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked we would KNOW.

It’s definitely not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may or may not take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, so accept me as I am. I know that you literally can not understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – on people who are not sick. I need you to visit me when I’m too sick to go out. Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know I've asked a lot of you, and I do thank you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

Fruit Crumble Redux - TYPO CORRECTED!!

 OK, I tried making the apple-pear-berry crumble again the other night; this time I used my oven thermometer to keep track of the temperature.  Unfortunately it fluctuated quite a bit, but it seemed to AVERAGE around 325 degrees Fahrenheit for most of the 40 minutes it was in the oven.

While I was reviewing the recipe I posted the other day, I discovered a TYPO in the ingredients!!  :(

I've now fixed the old post, and am posting the recipe again, just to be sure that everyone has the corrected version.  I made a couple of other minor changes as well.  I'm SO sorry about that and I hope that you didn't have a bad experience with this recipe already!!

Please give it one more try!

Triple-Coconut Berry-Apple-Pear Crumble
("triple" because I use coconut flour, coconut nectar, and coconut oil!)

Ingredients

Topping:

1 C almond flour
1/2 C coconut flour
1/2 tsp baking powder
1/4 tsp salt
pinch or two of nutmeg
1 tsp cinnamon
1/3 C of coconut nectar (or 1/4 C agave nectar)
1/3 C melted coconut oil (or melted butter)

Filling:

 4 large pears, peeled and sliced (or 2 pears and 2 medium apples, very THINLY sliced)
1 1/2  - 2 C fresh or frozen berries
1/4 tsp cinnamon
pinch of nutmeg
2 tsp cornstarch or arrowroot
2-3 T coconut nectar (or honey or agave)

Directions

Preheat oven to 325 degrees and lightly oil the bottom of an 8 or 9 inch pie plate.

Mix together the dry ingredients for the topping, then add the coconut oil and coconut nectar.  Blend well; it should be stiff and somewhat crumbly, of course.

Toss the fruit together with the other ingredients for the filling.  Sprinkle a small amount of the crumble topping on the the bottom of the pie plate, then spread the filling in the pan.  Use your fingers to crumble the remaining topping over the fruit filling.

Bake at 325 F for 30 - 40 minutes.  After approximately 30 minutes test with a sharp knife, skewer or toothpick; if the apple/pear slices are very tender, and the topping is a deep golden brown, remove from oven.  Serve warm as is, or with a scoop of vanilla ice cream, if desired.

Grain-Free Coconut-Almond-Flax Bread

Now that I have my trusty oven thermometer, I decided to bake something that I've been wanting to try for a little while now.  I developed this bread dough based on my grain-free biscuits, and baked it in a small glass loaf pan per Elana's recommendations for her almond flour and flax meal loaves.  Elana has learned by trial-and-error how to bake with almond flour plus flax meal, and I suspected that even though my recipe contains coconut flour too,  this dough would behave in a somewhat similar fashion.

Yes, it did, and wow....the bread turned out to be delicious!

If I do say so myself! ;)

Grain-Free Coconut-Almond-Flax Bread

Ingredients:

4 eggs
1/4 C coconut oil, melted
1/4 tsp salt
1/3 C coconut flour
1/4 C almond flour**
1 1/2 T flax meal
1 tsp baking powder
2 T coconut or agave nectar

Directions:

Preheat oven to 325 degrees.  Lightly oil, or spray with non-stick spray, a small loaf pan (NOTE: I used a 6.5" x 4" glass loaf pan, which is an odd size....a bit smaller than most, so adjust your cooking time accordingly if you use a slightly larger one).

In a large bowl, whisk together the eggs, coconut or agave nectar, and coconut oil thoroughly. Combine the salt, coconut and almond flours, flax meal and baking powder in a separate bowl, then stir into the egg-oil mixture, blending well.

Spoon the batter into the small loaf pan, and smooth the top with the back of the spoon.  Bake for approximately 30 - 40 minutes, until a knife inserted into the loaf comes out clean and the top is a dark golden brown.

**NOTE: I am following Elana Amsterdam's suggestion and using ONLY finely ground blanched almond flour. Some almond flours on the market simply are not fine enough to give a good texture to baked goods. For example, Bob's Red Mill Almond Flour just doesn't work. The flour that I'm currently using is Honeyville's Blanched Almond Flour.

My oven temperature stabilized close to 325 degrees, maybe a tad less.  I ended up baking the loaf for approximately 40 minutes.  I tested it for done-ness as one tests a pumpkin pie...by inserting a regular butter knife into the loaf to see if it came out fairly clean.

This loaf of bread stored well (covered) for 3 days on my kitchen counter; it stayed moist and flavorful and pliable.  I ate it plain, and with lemon curd.  I haven't tried toasting it yet, but since the slices are so small, I will probably use the broiler rather than the toaster.

This is a great alternative to the high-carb gluten free breads available in the stores; this bread is very nutrient-dense, high in fiber and relatively low in carbohydrates.  It is made with low-glycemic-index ingredients, so is shouldn't spike your blood sugar like most baked goods will.

Enjoy!

Oven temperature inaccuracies!!

I've recently discovered that the oven in our new house is NOT at all accurate.  Which causes big problems for me (and potentially for you, if you are trying any of my recipes!).  The oven seems to be running about 50 or more degrees cooler than I set it too.  

I have now purchased an oven thermometer and plan to make the fruit crumble again soon, so that I can determine exactly how long to cook it and at what temperature.  Since it took about 35 minutes in my oven, which was probably NOT at 350 but rather around 300 degrees, it may cook MUCH faster in yours if you set it to 350.  Please keep an eye on it and test the fruit for doneness after 20 minutes or so.

Fortunately we have only lived here since July, so any of the recipes older than July 2010 should be fine.

Comfort food for fall - Mixed Fruit Crumble - CORRECTED!!

Dear readers, I don't know about you, but I LOVE fall!  I love that it's cool, even chilly, but that the raw, sharp winds of winter have not yet arrived.  Here in California the weather is fickle and there can still be a few warm days even in October. 

Naturally fall brings to mind some of my family's favorite comfort foods, and very high on that list are fruit pies, crumbles and crisps.  Fortunately the physical problems I was complaining about in the last post (nausea and food aversion) have subsided for the most part, and I've been able to eat a bit....which means that I've been able to cook a bit, too!

The other night I was looking at the fruit we had in the house....pears and apples in the bowl on the counter, blueberries and raspberries in the fridge. I wanted to create something warm and comforting.  It helped that I had been reading a number of gluten free food blogs recently (including Karina's and Elana's)....I was inspired to bake a mixed fruit crumble, using all of those fruits that we had plus a new all natural sweetener I'm trying out: coconut nectar.

Coconut nectar is advertised as being more nutritious than agave nectar, and is simply the raw sap of the coconut tree.  It's very sweet, similar to, although not quite as sweet as agave nectar, and has a very low glycemic index.  It is also MUCH lower in fructose than agave nectar.

NOTE: you may use all apples or all pears and/or any berries you prefer...I just used what I had, and it turned out to be SCRUMPTIOUS!

Triple-Coconut Berry-Apple-Pear Crumble (CORRECTED)
("triple" because I use coconut flour, coconut nectar, and coconut oil!)

Ingredients

Topping:

1 C almond flour

1/2 C coconut flour
1/2 tsp baking powder
1/4 tsp salt
pinch or two of nutmeg
1 tsp cinnamon

1/3 C of coconut nectar (or 1/4 C agave nectar)

1/3 C melted coconut oil (or melted butter)

Filling:

4 large pears, peeled and sliced (OR 2 pears and 2 medium apples, THINLY sliced)

1 1/2 - 2 C fresh or frozen berries (I used fresh blueberries and raspberries)

1/4 tsp cinnamon
pinch of nutmeg
2 tsp cornstarch or arrowroot
2-3 T coconut nectar (or honey or agave)

Directions

Preheat oven to 325 degrees and lightly oil the bottom of an 8 or 9 inch pie plate.

Mix together the dry ingredients for the topping, then add the coconut oil and coconut nectar.  Blend well; it should be stiff and somewhat crumbly, of course.

Toss the fruit together with the other ingredients for the filling.  Sprinkle a small amount of the crumble topping on the the bottom of the pie plate, then spread the filling in the pan.  Use your fingers to crumble the remaining topping over the fruit filling.

Bake at 325 F for 30 - 40 minutes.  After approximately 30 minutes test with a sharp knife, skewer or toothpick; if the apple/pear slices are very tender, and the topping is a deep golden brown, remove from oven.  Serve warm as is, or with a scoop of vanilla ice cream, if desired.

By the way, I think it's great that several other gluten free food bloggers have discovered that mixing coconut and almond flours really works!  The first time I mixed them (for my grain free garlic cheese and grain free classic drop biscuits), I had never seen any other recipes that combined those two flours. But now there are others posting recipes on their blogs using mixtures of those two flours!  How cool is that!

What to eat when you're too sick to eat

I'm having some very weird symptoms lately....weird for me anyway: severe acid reflux, nausea, and food aversion.

Food aversion is actually fairly common for people with Lyme disease, from what I hear. And of course nausea/loss of appetite is a problem that many chronically ill people deal with on a regular basis.

This will be GREAT for weight loss, of course, but the problem is that I have a lot of medication to take and much of it needs to be taken with food. One antibiotic, Mepron, is supposed to be taken after a fatty meal (approximately 20 grams of fat per tsp of Mepron enhances absorption of the medicine)! Fatty food sounds so revolting to me right now!! So what to do?

Several kind people suggested making smoothies and sipping them slowly, and one person actually gave me her recipe, so I will share it with you, in case anyone else besides me is having this problem with food aversion....

Ann Marie's Berry Smoothie

Ingredients:

1/4 C Greek-style yogurt, plain (I use Trader Joe's)
1/4 C almond flour or almond meal (make sure it's certified gluten free!)
frozen/fresh fruit (blueberries, strawberries - nothing too sweet)
a dash of aloe juice to soothe the stomach
a dash of water with lime

Directions:

Whip everything up in your blender or magic bullet, and voila!

According to the nutrition info, there should be exactly 20 grams of fat in this, and I can assure you that it does not seem fatty when it's going down. Yay for almond meal!

I have to stay on a fairly low carb diet now (just found out that I'm pre-diabetic, oh joy!). The nice thing about this smoothie is that the carb content is not bad (< 10 grams?) and if it needs to be sweeter I can add a trace of stevia without adding to the carbs.

Dusting off the Crockpot again

Decided to do a cooking post tonight....I'm sure everyone's had enough of my health issues for a while!

And it's definitely getting to be the right time of year for Crockpot cooking...Autumn is just around the corner and the college football season has already started. Hubby was in the front room this evening as I was putting the finishing touches on dinner in the kitchen; he was almost jumping up and down with joy as the Boise State Broncos managed to win (very narrowly) against Virginia State. Well, I was happy too, let's face it; my daughter Robin just graduated from Boise State last June and we've all adopted that University as our own in this house, at least where football is concerned!! :)

So tonight I made another wonderful Indian curry recipe from the Crockpot Lady's blog; I had tried a couple of curries from her site before, both of which were good, but this one was over the top GREAT! I loved it, and my five year old cleaned his plate! My husband is not a big curry fan but admitted that it was good and that he enjoyed it. Which is good because I made a LOT! LOL!!

Yeah, I know that curry and football don't really go together as far as most people are concerned, but I really wanted some curry tonight! :)

The recipe I used is Crockpot Chicken Makhani, aka Indian Butter Chicken...I made my own slight modifications. Stephanie's recipe is here; she got it from a fellow blogger, Kindra, and modified it to suit herself. Kindra's recipe is here.

Crockpot Chicken Makhani

Ingredients

2 pounds boneless skinless chicken thighs (can be frozen)
1 med onion, sliced
6 garlic cloves, chopped
1/2 stick butter, cut into chunks
15 cardamom pods (sewn together or tied in cheesecloth)
2 tsp curry powder
1/2 tsp cayenne pepper
1 T garam masala
approx 1 inch grated fresh ginger root
1 can coconut milk (13.5 oz)
1 can (6 oz) tomato paste
2 T lemon or lime juice
1 C plain yogurt
1 tsp salt (more or less to taste)

NOTE: If you don't have cardamom pods, you can use 1/2 tsp ground cardamom, maybe a bit more. You can always add salt, more spices, to taste. Always feel free to modify it to suit your own taste buds!

Directions

Use a 5 quart or larger crockpot. You can either sew together the cardamom pods using a needle and thread or you can tie them in a little cheese cloth bundle instead, if you have cheesecloth in the house. Put some sliced onion in the bottom of the crockpot, then place chicken on top. Scatter rest of onion and garlic over chicken. Combine dry spices, grated ginger, tomato paste, lemon or lime juice, and coconut milk in a medium sized bowl and pour the resulting mixture over the chicken and vegetables in the pot. Drop chunks of butter randomly over the top.


Cover and cook on low for 8 hours, or high for 4 (I doubled the recipe and cooked it on high for 2 and low for 4). The chicken will shred easily when fully cooked.

Stir in the plain yogurt 15 minutes before serving.


Discard cardamom pods. Salt to taste, serve with white or brown basmati rice. Enjoy!!