May 16th, International HAE Awareness Day!!

 

HAE - Hereditary Angioedema.  A very rare, potentially life-threatening disorder that is under recognized, often misdiagnosed, and mistreated for many of us.  Today, May 16th is International HAE Awareness Day.  Please help me spread the word of what this disorder is.  Too many providers, nurses, and people in general just don't know what this disorder is.  It affects 1 in about 50,000 people and is on the Rare Disorders List in the United States and Internationally.

Just what is HAE?  HAE is a genetic defect in the 'complement cascade' of the immune system that affects the body's ability to control 'edema' (swelling).  There are various 'types' though regardless of the type, we all suffer with many of the same symptoms.  Some have a lack of the protein that keeps one from 'swelling'.  Others have this protein that is 'broken' and yet others they just don't understand yet what causes it.  That is very simply put.  It is actually quite complicated.

So, why do providers and health care professionals 'miss' this diagnosis?  It is very complicated to diagnose! Many times it can 'look' like something else.  It can look like an 'allergic' reaction, a stomach disorder, or something else altogether.  Additionally, the symptoms can vary from attack to attack.  One day it could be a 'facial' swell, the next it could be an 'internal' abdominal swell with significant abdominal pain, and the next time an 'external' abdominal attack where someone looks nine months pregnant when they're not!  An individual may also just get a hand or a foot swollen.  For me, it took 38 years to get a proper diagnosis (and that was just about 15 months ago). I would have 'attacks' of all varying degrees from very mild to quite severe.  However, my attacks are usually abdominal or facial.  And there are 'triggers' that can make it worse such as 'hormones', stress, food allergies, etc.  Why food allergies?  They're along the complement cascade as well.  Additionally, many of the 'foods' can have 'hormone' properties which are a direct trigger for it (e.g. soy).

A bigger issue now is that when a patient visits an emergency room they often are not 'believed' with what diagnosis they have.  Even with a definitive diagnosis, many emergency room providers don't know how to treat, are reluctant to treat effectively, wait to treat, or don't feel it is necessary. I personally have been told by an emergency room physician "I'm not going to treat you with a $10,000 shot for something you don't have."  How on EARTH could he say that to me after I WAS definitely diagnosed with this disorder and was struggling to breathe?  I personally believe often times, they don't like being 'questioned' or 'told' about 'how' to treat anyone.  However, this is one disorder that really isn't taught in medical school, is not taught to nurse practitioner students (I'd never heard of it until I was diagnosed) and most nurses don't know anything about it.  These providers need to understand that as patients, we are very well aware of what we are living with and how to treat it!  We have a wonderful organization that fully supports us and ensures we are aware of all that is available to us.  We have to do something to raise awareness and get patients proper care and treatment!  Without it, people can and are still dying from this disease every day.  Please help me raise awareness!!

Treatment for this disease is extremely, extremely expensive.  There are currently 4 'best' treatments that are injectable medications either through subcutaneous injection or intravenous infusion.  One 'infusion' whether it is subcutaneous or intravenous can cost at a minimum of over $7,000!!  A month's worth of medication can range from $20-36,000!!  A couple of these medications are used 'preventively' and a couple are used as a 'rescue'.  Many insurances do cover these medications as it is considered a life threatening disease but many insurances will fight tooth and nail to keep from approving it.  These medications also weren't available in the United States until about 4 1/2 years ago.  Prior to that the only medications available were metabolic steroids.  However, metabolic steroids have serious adverse affects on the body and are no longer considered first line treatment.  I was on steroids for a period of one month and it was horrible.  I had mood swings, trouble with my liver, high, high blood pressure, and more.  Not fun at all!!  I now have one of the new medications and it has been a Godsend!  I've only been to the emergency room once since I've started on that medication.  I was dehydrated and had a severe abdominal swell that was more 'internal' and couldn't be 'seen' until much later and then I looked like I was nine months pregnant.  It was agony to say the least.  I was 'allowed' to use my 'rescue' medication in the emergency room while they gave me fluids and pain medication and it slowly resolved.  I was still sick for a few days after but not like I use to be.

Things have drastically improved since I've been on the type of medication I now have.  However, awareness still needs to be raised all over!  Too many are going undiagnosed, under treated or untreated because too many just don't know about it.  Please help us raise awareness for HAE!!

For more information, go to the Hereditary Angioedema Association's website!  Have a great day!!

Pet Peeves of Illnesses

Tonight I saw a post by Huffington Post about the 'Pet Peeves' of Gluten Sensitivity/Allergy.  In fact it became a trending topic on Twitter!  When I responded on Twitter tonight, many of the same 'pet peeves' that were answered were the same as I had which got me to thinking - everyone with healthcare issues has to have 'Pet Peeves' about their illnesses, what are yours?  I'll start by listing a few of mine.

I have not only severe food allergies including wheat but also Hereditary Angioedema; a rare and potentially life-threatening genetic immune disorder (HAE Day is May 16th by the way!).  As far as my allergies go, it annoys me to no end to be in a restaurant and treated as though I'm 'making it up' to be 'difficult' for the server or chef.  If I could eat what they put in their food, I would prefer to order it that way!  Please don't just 'remove' what the allergen is, I can still have a reaction!

Another issue is people making comments such as 'Oh, I couldn't give up bread.'  Well, I hate to tell you but you COULD if your life depended on it!  You can give up any food, any substance, anything if your life depended on it!  Trust me, I've given up far more than the average person!!  Try living without the following foods just for one week: wheat, rice, chicken, pork, turkey, olives, cinnamon, lemon, grapefruit, millet, barley, honey, bay leaves, bananas, buck wheat, rice, garlic, onion (all alliums including green onions and leeks as well), all melons (watermelon, honeydew, cantelope, etc.) paprika, turmeric, kiwi, tuna, avocados, raw tomatoes, raw potatoes (when peeling them), pitted fruits (peach, plums, cherry, etc), pumpkin, cucumber, hops, soy (including soya lecithin), lentils, walnut, pecans, celery, squash (all including zucchini, spaghetti, etc.), spelt, apples, and all the artificial food dyes.  I think that about sums it up.  Yep, those are the things I am allergic to.  Makes it near impossible to eat!  Also, many, many, many of these items are HIDDEN in other things!!  Things such as the 'spices' (garlic, onions, turmeric, etc.) or even lemon, soya lecitthen, soy sauce, etc.

I hear all the time as well 'Oh my God, what do you eat?'  Not exactly a 'nice' thing to say to a person.  It's hard enough!  Or when I DO tell them we eat 'other things' like gator or frog legs, I hear 'Oh, you're just disgusting'.  Gee thanks.  So, you would rather I eat these other things that will outright make me ill?  I don't think so!

Another question I often get asked is 'So, if you eat it, what happens?'  What difference does it make!'  I can't eat it!  Period!!  Just be understanding and move on.  Or better yet, "So, we can't make you anything to eat anymore, I guess you'll have to bring your own."  Have a little understanding and ask for a recipe of something!!  It's hard enough for us with these kinds of illnesses every day, do you have to make it harder on us?  We enjoy going out just like everyone else.  If you KNOW we have this going on, communicate with us to ensure we can be there and enjoy ourselves like everyone else.  It's really not that hard.

So, on to you all - what is YOUR pet peeve with your health conditions?  I know there are many!  Feel free to post them but be polite and clean!  Thanks for opening up the conversation Huffington Post!  One thing I have learned from all of this - read labels, plain and simple.  It sure saves a headache!!  It doesn't mention what we do from here though..... Ideas anyone?

Happy Mother's Day!

Happy Mother's Day to all the mother's out there!! While it's too late to order for mother's day, it isn't too late to order for another day!!  How about graduation or father's day?  They're coming up as well!!  How about a gift box of spices for dad?  A body care gift set for that grad?

Next week (hopefully!) we will be debuting a new blend!!  Pizza anyone?  Just mix this in some tomato sauce and voila'!  Pizza sauce!!  So, stay tuned for more to come!!  Ciao!!

Only One Week Left!!

Mother's Day is One Week from Today!!

Don't delay!  Get your mother's day gift baskets now!  Order by Wed night at midnight to ensure on-time delivery by Saturday for mother's day!!  Just go to our Holiday Specials page and order from there!  If you live in the immediate Columbia area, free delivery (it may charge, but will be refunded for Columbia, SC residents!)!!

New product as of today!!  Whipped Shea Butter Body Butter!!  Still need a photo to put it up but feels oh so amazing!  A wonderful thick rich shea butter whipped with arrowroot powder, vitamin E oil, and we can specialize it with a fragrance if you like (essential oils).  Just $9.00 for a 4oz jar!

New Size Jars & Holiday Specials!!

Now Available!!  Larger 6oz jars!  We have four of our favorite blends available in large 6oz jars for only $6.50!!  What a fabulous value!!  Links are up on our product page!  Spice & Dip Mixes Products  The blends available include Bayou, Chili Powder, Caveman, and Mexican.  We will be getting all our blends in this large size very soon!!

Additionally, Just a note that all our dip mixes can be made into dressing!!  How is that you ask?  Instead of mayonnaise, use vegan or grass fed buttermilk instead!  It's wonderful!!  I will try to post a picture the next time we mix one up.  Have an awesome week everyone!  I have much to prepare for this weeks markets!!  We have run out of many items and need to get more made!  Foot cream, lip balms, lotion bars, soaps, and more!!  I have even created my own brand new 2 butter, almond-coconut oil soap recipe I'm going to test out!  Stay tuned for that one!

Mother's Day is Coming!!  Sunday May 12th is just 2 weeks ago!  Order now before time runs out!!  Our page has been updated especially for Mother's day!  We have some great specials and a great new 'spice pack' of jars!!  Be sure to go to the Holiday Specials Tab for these great deals!!

Soft Shell Crab, Zesty Salad Greens with L'Ecuyer's Ranch Dressing and Roasted Artichokes!

We were at Soda City Market again today and had a fantastic time!  We get to meet lots of people and I was able to pick up a CSA Bag of greens from City Roots Farm, some wonderful Soft Shell crabs from Our Local Catch and we made our Ranch dip mix into dressing for a change!  All this made for a fabulous dinner tonight!!  Right now I feel like I just want to roll over and go to sleep, I'm so stuffed!

Just take a look!!

And, even better yet was that this was a completely Paleo dinner!!  How could this wonderful dinner be Paleo you ask?  Just look on for recipes!!

Zesty Salad Greens with L'Ecuyer's Gourmet Ranch Dressing

1 package City Roots Farm Zesty Salad Greens
1/2 tomato diced (we have to use canned as I'm allergic to raw tomatoes)
1/2 package L'Ecuyer's Gourmet Ranch Dip Mix
1 cup Organic Grass Fed Buttermilk
1 cup Organic Grass Fed Sour Cream

Place salad greens and tomatoes in a bowl and toss.  In a separate bowl, combine dip mix, buttermilk, and sour cream.  Blend well.  Allow dressing mix to 'chill' about an hour before serving (optimally).  Drizzle dressing over salad and enjoy!

Pan Seared Soft Shell Crab

Ingredients
4 fresh soft shell crabs, cleaned and dried
1 cup arrowroot flour
2 tbsp L'Ecuyer's Gourmet Caveman Rub
1 cup Coconut Oil

Directions:
Mix arrowroot flour and L'Ecuyer's Gourmet Caveman Rub together.  Dredge cleaned crabs in flour mix.  Heat oil in skill over medium high heat.  When oil has reached 350 degrees Fahrenheit  place crabs into oil using tongs (be careful of oil splatter if crabs are not dry!).  Let sear for 3-4 minutes until crisp.  Turn and cook other side for another 3 minutes until crisp.  Place on rack over paper towels to drain any remaining oil.

Roasted Artichokes

2 globe artichokes
1 lime
1 tsp L'Ecuyer's Mexican Blend
Almond oil spray (I use Pampered Chef's pump bottle) or Olive Oil (I'm allergic to Olive Oil so I use Almond)
Pan of boiling water
Tabletop or outside grill

Bring pan of water to a boil (large enough to put both artichokes in).  Cut top 1/2 inch or so of artichoke off and bottom Cut both artichokes in half and clean the insides out (hair, and guts).  Rub the lime over the cut parts of the artichokes (helps prevent browning).  "Par boil" the artichokes in the boiling water for 10 minutes.  Be very careful placing them in the water (use tongs).  Remove from the water and lightly spray with oil and drizzle with L'Ecuyer's Gourmet Mexican Blend.  Place on heated grill and grill until nice and roasted, about 10 minutes.

Finding Healthcare without Insurance

I often hear how healthcare is so expensive when someone doesn't have health insurance.  This doesn't necessarily have to be true.  Through associations with the federal government, there ARE places someone can go to if they don't have health insurance (or are 'under insured').  In 1965 a group of centers were formed known as 'Community Health Centers'.  What started as a small group has become one of the largest groups of health care providers in the country providing services to millions of people throughout the country.  Over 1,200 centers serving 20 million people!  So, why don't more people know about these places?  It's a little know secret as I say!  They aren't 'advertised' as advertising is expensive.  Word of mouth is the best advertising.  And since these places run on grants (and not just federal but outside sources as well), intake from what insurance income they receive and the minute amount of 'sliding fee' income they receive from patients, advertising funds just aren't there.  How do I know about these places?  I work for one and have for many years!

You can search for one of these places by going to the HRSA (Health Resources and Services Administration) search page here: Find a Health Center.  Just enter your zip code and it will find locations near you.  To utilize their services you usually have to provide proof of income (2 pay stubs or a print-out of your tax return or something from unemployment or social security, etc), list the number of people in your home, etc.  They often have programs as well to help you with medications that can connect you with 'Prescription Assistance Programs'.

In the area I live, we even have a program in our county that helps with 'tests and scans' so that we can assure that people are cared for.  Most communities likely have similar programs.  So, if you need to be frugal, or are forced to do so with your healthcare; find a community health center near you!!

However, not everyone will qualify to receive the 'sliding fee' scale.  It is based on the poverty level and number of individuals in your family.  To find out if you qualify under the poverty level, you can check here:  US Poverty Thresholds.  To qualify, you have to be under 200 percent of this level.  This means you multiple the level for the number of your family members by 2 of that income level.  So, if it is $23,550 for a family of four, your income would need to be $47,100 and below.   These centers also accept just about every insurance there is that most other offices won't accept including Medicare, Medicaid (including all the HMO programs), Tricare, and more.

If you need someplace to go, this could be your answer!  Many providers are the most caring and giving individuals I have ever met!  Have a great night!