Feeling Blessed

This article made me feel doubly blessed today: http://www.nasdaq.com/article/aegerion-pharmaceuticals-observes-first-annual-fh-awareness-day-20120920-00558

 

It made me feel lucky, for once that we now have a “National FH Awareness Day”. I remember coming to the US, and hearing that almost every “incurable” disease has a support group, an organization, a research community, an awareness day, week, or even a month (like February for heart disease). But I was not able to find any books, online literature, doctor brochures, anything on FH! I was bummed.

Until a year ago, I still didn’t know there was a support group, till I found one on Facebook (linked to this blog).

I am glad there are more ways than one now to connect with people like us out there, and to know that 1.0 this is a real disease, and that 2.0, hearing their stories, there is life for us. And so much of it!

Another reason I am really grateful after reading this article was because of my reaction to this sentence in the article: “Despite current treatments, many patients with HoFH do not survive beyond their mid-30's.”

I have HeFH, but that is a statement that I have heard over and over and over again from every doctor I have ever seen since I was 6! With an (untreated) total cholesterol of 500-700, my life expectancy was not to be higher than maybe 25-30! I am 37 and 5 months old, and if you look at my recent numbers you might have a heart attack yourself!

Sure, I will never be “cured”, right?! I am still very much just “managing” this – my blood pressure is still high, so is my heart rate, the blockages inside my carotids and heart are still there and some of them worse. But I live a full life! I have been able to live on my own before, with no “life alert” bracelet attached to me, for years. I work a full time job, and a stressful one at that. I travel, I have hobbies, I love my family, and I have not spent one day in a hospital yet, for anything other than tests. In one word – I live. I don’t feel at any time that I am surviving this. I am fully, and wholeheartedly, living this. To what I think is the fullest of this.

I hope that people that are just now finding out that they have this disease are energized about these opportunities out there – not only to get medicine, but also to connect. I hope that they are hopeful, as well. I trust that everyone will know that this is just another thing we were given, when the cards were dealt – kind of like we were made short, instead of tall. It’s part of us, not in spite of us.

We can adjust, and learn to live with this. And thanks to medicine and geeks who develop more treatments, there are many doors to be open for us. And now, we have an official national day to party and celebrate.

Enjoy, y’all! Life is good!

How I Cook: Stuffed Peppers

I thought I’d make a brief record of how I usually cook. First, I want to say that I don’t stay away from any foods that I absolutely love. Even if they are high protein foods, which, as you know, is a big no-no for FH, I still make them. What I try to do is make lower fat choices, if I can. And if I can’t, I try to not eat them that often!

 

I almost never eat red meat – like a steak, ribs or hamburger. But the reason I don’t eat that is because I hate it! I am not sure what it is, whether it is the fact that I didn’t eat it for years and never really developed a taste for it, or it’s the fact that it simply does not appeal to my taste buds – not sure. I can only say I am lucky! One less thing to consciously cross off my food list!

I had a bunch of fresh peppers from my yard this week. But not enough (they are never enough!) to make pepper spread. I usually would need at least 3-4 pounds to make it worth while. So, I decided to stuff them tonight. 

 The start ... - all the veggies but the onion came from the yard.

As you can see, I use 85% lean turkey for the meat, and fat free sour cream for the topping. The rest, is just fresh veggies, and jasmine rice. I have tried brown rice for a while, but I am not able to find any brand that really cooks fast enough for me! I have no patience for things that take a long time to cook, but since I moved to Utah, because of the higher elevation, they take twice as long as anywhere else I have cooked in my life! I am sorry, but I don’t have an hour to boil rice! So, jasmine rice it is – and I missed including it in the raw ingredients’ picture. So, I apologize for that.

Instead of the canned tomato sauce, I pureed some tomatoes and made some fresh sauce instead – it worked out beautifully, and the taste of the whole pot is amazing!

I also half my peppers, and I fill up just halves – this way, I eat two halves instead of 2 peppers, which makes the meat intake even smaller – although it’s lean meat, so it’s all better.

I sometimes add a slice of wheat or whole grain bread to the plate, when I eat just one half of a pepper. Absolutely no butter on my bread – that’s one of my peeves, when some restaurants try to sneak that on you.

You will have to get used to some “color changes”: because you use turkey, it cooks lighter than beef (more towards white, than red). Also, because of the fresh tomatoes, the redness of the sauce is not there, either.

I bake this in a 425 oven for about an hour and a half (again – elevation forces me to!), and I don’t coat the baking dish with oil. I just spray some PAM on the glass dish, and I put plenty of water in it – just about till the water level reaches half way to the “height” of the average pepper. 

 The finish ... - I wish you could smell the house, right now ... 

One last note: I am usually not picky about any brands, and I am not sure who makes the sour cream in this picture, but it is the best fat free sour cream out there! Full of flavor, and creamy and smooth. Not watery or without a soul, like any other brands. If you can find that in your world, get it!

Ingredients:

Jennie-O’s 85% lean turkey

Green peppers

½ cup jasmine rice

Any kind of juicy, ripe tomatoes

Onions

Carrots

Fresh parsley

Fresh dill

Salt and pepper

PAM

Water

I usually eyeball everything, so, sorry, but no measurements.There is no skimping on flavor here, for sure. With the fresh veggies and the onions and fresh herbs, you make a world of aromas. And baking it in a screaming hot oven for over an hour only enhances that! My husband leaves the sour cream off, but it is a Romanian staple and I cannot eat stuffed peppers without it. Try it both ways and choose your own style.

Bon appétit!

Numbers. Tests. Plans

It’s been an understated while since I came by, but I am finally here! It’s been a busy year and a busy summer, or so it feels – although, if you want me to give you the laundry list of what we did, I feel like it’s a pretty short one!

 

We ate up two weeks of vacation by going to Romania in the spring, so we had little to no time off left. Thus, we tried to stay close to home and enjoy what’s here, at hand.

I am not sure whether it’s the fresh veggies diet of the summer again, or the fresh, ripe tomatoes, or the increased amount of kale we have been eating – your guess is as good as mine, but my new numbers are amazing. My total cholesterol is at an all time low – 244! I could hardly believe my doctor in August, when she announced that to me, with a raised eyebrow, and a chuckle: “I hope this is yours!” – she said. Indeed, I hope so too. The LDL is 199 – still high, but low for me, of course. The HDL is very low, not a good thing – at 35. The triglycerides are normal again , and that also shows that my diet might have something to do with it all. There was no change in the medication. All the same stuff: Lipitor, zetia, fish oil, atenolol and aspirin. There was a major hike in the stress level, too - more about it in a sec.

It was time for a repeat carotid CT scan – something they do every 2 years, just to make sure my plaque is not “bad enough” where they must do something about it – a stint, balloon, or some other type of surgery, that is. This year, instead of the regular ultrasound of my carotids, they did a full blown CT Scan. My insurance didn’t like this so much, so now, I have a $700 “this is not a bill but it’s the patient’s responsibility” on my desk! I am waiting to see if they really are not paying this. If I have a heart attack, we now know that cholesterol won’t be the reason.

The scan was a bit more “invasive” than the usual ultrasound. Instead of just the goopy gel smeared on your neck, you had to undress from the waist up, get an IV, get some saline (which makes you cold) and then some contrast dye (which makes you hot and feel like you peed on yourself), lay on a table and be pushed in the “turbo tunnel” for the scan to happen. It was not that bad, with the exception of the dye which did make me check my pants just to make sure I didn’t have an accident, and which flushed my face for most of the rest of the day. And of course, without the exception that … I hate IV’s – especially the unannounced ones.

They did an ultrasound of the arteries and veins in my legs, as well, because lately I have had a long, deep pain in my legs. My veins look swollen almost all the time, and with a history of varicose veins, and with a couple of hour commute each day and with a sit down job, I was fearing something might be happening down there. The result for the legs came back as “normal”. The carotid scan showed that the plaque is worse than last time (two years ago), but “the doctor will talk to me about her recommendations of what to do next on my next appointment”. That is in … February. So, it must not be that bad!

Other than the fact that I have noticed my BP higher than normal and more often so, I feel OK. I have been promoted twice at work this year, and life at the office is more and more hectic. More responsibility, more people to be responsible for, bigger “fish to fry”, so to speak, all give me no time for much else, including being actively involved in my physical and mental health!I have not even had a cardio appointment this year. And I put off my regular doctor's appointment for months, till I finally got to it last month!

We have not been camping or even hiking this year. We went for a hike once this year, and fall is here now, so that will be it. I am trying to make the right choices, as always, in what I eat, but we have been eating out and have eaten “quick foods” more than usual lately, too – because there is no time for cooking! I am not proud of that, of course, and I will try to fit some kind of plan in my new, busy life – it requires a complete restructuring of my time in my new “manager” life. But it will happen. It will have to, if I want to live some more.

I have gardened a lot all summer, and that has been the most actively full part of my life. We have had a dry-dry-dry season! I had to water my veggies and flowers virtually every night. Here, in the desert, the water just gets sucked away the minute you sprinkle it! There is no shade! Just scorching sun for 12 hours a day, or more! I am looking for ways to preserve kale and cabbage for the winter, as both have generously produced this summer, and I would rather use every green, beautiful leaf they have given me. We also built a patio and several flower beds loaded with bushes and mulch, all around the house – those were all a labor of love. We were sore for weeks. More proof that I am so out of shape. So, we have not quite been couch potatoes, but we could have done more.

I keep saying “we”, because my husband needs the exercise and the healthy eating too for almost the same reasons as me. I must say that the low numbers do boost my spirit. I think they are a great victory, but I do wonder where they came from, so I can keep doing it.

I am making some grape preserves this week, and freezing up the first batch of tomatoes, too. I already made several batches of basil, cilantro and Italian parsley pesto, too. The herbs were wild this year!

It’s fall now. The air is cooler, and the days are shorter. It not high time to plan to get active, as you can imagine, but some changes will have to happen.  I will have to use the treadmill more, now that the garden is slowing down. We had a good rain today, for the first time in a long, long time. We have rain in the forecast for a couple more days. So, my summer activities are slowly disappearing. 

I am looking forward to new opportunities, and new numbers, in the fall, winter and beyond. I hope I can keep them down, and I hope I can come by here more often. All these plans! Here’s to the burning desire of wanting to keep them!  I do hope, with all my heart, that I can materialize it. And I hope I can find time to see my cardiologist, too, for that buggy BP!