FH People Are Emotional Eaters, too!

One of my friends who just had a baby posted on Facebook that she is likely to soon turn into a goldfish cracker. I am just guessing, because she’s busy being a new mom, eating whatever snacks are in her way, this could happen.

And I tell you what – some days lately I feel like I am going to turn into everything I eat, too.

I have had a love-love relationship with food lately. I would love to eat it, and it loves to tease me – constantly – to eat it, too. I usually eat … not so very healthy in the winter, as it is, just because I am so not a winter person and all that cold makes me do is crave gravies and mashed potatoes and hearty potato and bacon soups. Oy! I know, you’re thinking: suicide! And I agree!

On top of the winter blues, for reasons totally unrelated to FH, I have also had to take hormones. It’s a temporary thing, that will go away once I can be scheduled for a surgery (long story!). But for the past month or so, I feel like eating the paint off the walls because of these pills! I try really hard not to give in, but I swear I am gaining weight by just the thought of wanting to eat alone.

And when I do eat, it’s comfort food, and soft, warm, white carby messes. I made a kale and turkey sausage soup the other day (good!) and although it’s deliciously healthy, I am craving Pillsbury Grands with it! Again, I tried not to indulge. I just added a couple of spoonfuls of fat free sour cream for extra silkiness.

Some foods I have indulged into lately, however: (frozen) pizza, shrimp alfredo, Village Inn’s country skillet (comes with eggs, sausage, fried hash brown potatoes – to absolutely die for – and I am sure that’s what I am doing, too!), PF Chang’s Singapore street noodles – I keep telling myself they are healthy because of the veggies and because they are spicy, but they are fried…

I know this will get worse – as I will be going through surgery and then healing and one thing I don’t need is watching what I eat to ruin my mood. So, I write with a sigh, and hoping I can at least put things into perspective for me before I let this whole craziness take control of my life!

I am still trying some healthy tricks, in the meantime, just to remind me of the “good path”  – like still using low fat or no fat ingredients in my own cooking, and I have just introduced a glass of carrot juice a day for extra veggie intake. And a Vitamin C to help me boost this immune system that’s trying to kill a head cold for a month now …

I have subscribed to blog and news updates from low fat cooks and FH/ heart doctors, still hoping to keep me on track. But I am human. And the winter, coupled with the hormones and the slight moodiness about my newest diagnosis don’t help. I am not blaming anything or anyone on my lack of control, of course. Like said – just putting it into perspective …

I wish I could say it’s a lifestyle by now for me to just stick to a healthy regimen, but as you know – it’s a daily reminder and sometimes a daily struggle, too. As long as you give yourself room to fail, a couple of un- healthy breaks, here and there, forgiveness, love of yourself and much, much understanding. I think you’re still on the right path!

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!  

Just a Brief Note – on Drug Prices and Some Other News

Happy New Year, to all!

I hope this year brings you health, hope and happiness!

I am starting this new year with yet another renewed goal for more exercise and healthier living choices. As you would expect, the older I get, the harder it is to keep myself in shape, and to keep my numbers in check. I am also starting this new year with renewed hope and gratefulness. Many a doctors predicted I would be much sicker, or even dead way before my thirties. With God’s will, I will be 37 this year, and I am still living a full life. There are no words to say “thank you” for that. To the stars, God, nature, my doctors, and my body, too.


I stumbled upon this article the other day and it made me pause for a while and re-live my life, in a way. A lot of folks had negative reactions at the new guidelines for screening kids, but if there is even a small doubt that, for whatever reason (family history, lifestyle, etc) your kid might have high cholesterol, I believe you can’t do the screening early enough. The more you know, the earlier you know, the better a chance you have that you shape your kid’s lifestyle in a way that will ensure they can live a well rounded, full life and manage this disease better, before the damage is done to their hearts and brains, and before they can’t breathe while going up a flight of stairs. After all, it’s just a blood test! We’re not talking about donating a kidney here. Just my humble opinion, of course.

On a completely different note, I filled my prescription for the generic Lipitor the other day. I do hope the efficiency of the drug is the same, as I am really liking the price! I am paying $15 for a three month supply, as opposed to the $50 a month for the real thing (with insurance, of course). That’s a $135 discount every 3 months! I am really hoping the “you get what you pay for” shan’t apply here!

And Here We Go Again

Another day, another (early) appointment. Waking up early, showering, fasting, packing up breakfast for work, and meeting my doctor for my 6 month appointment. The usual. I usually schedule these appointments first thing in the morning, and I fast, even if they don’t tell me specifically to do it, because they almost always realize they missed a test and they need to poke again. And I’d rather do the test then and there, rather than come back another day, and miss some more odd hours from work.

They did my blood tests about 3 weeks ago (the every 3 month routine for that), and this was the follow-up of that, as well. The doctor was disappointed as all my cholesterols went up; the total went from 274 to 304. I assured her I am eating even healthier than before, so I am not sure what the deal is. Truth is, I am eating healthier, since my husband was diagnosed with diabetes, and overall, I think I am under less stress than earlier in the year. And yet, the numbers are up. True, I am not walking or hiking nearly as much as I did last summer, but still: 30 points is a significant jump, even for me! The blood pressure has been doing some insane things lately (like when it dropped to 60 over 40 during my stress test a couple of weeks ago).

The doctor was sort of blasé: she said: “Well, with you, you eat right, you take the pills and you pray for the best. But you never know what you’re gonna get!”. Isn’t she ever so right.

She is not going to add anything else to the drugs for now. Due to the fact that there is a laundry list of other symptoms completely unrelated to cholesterol that might be pointing to some hormonal dysfunctions, she is doing a thyroid test (I told you: more blood tests) today, and she is referring me to some specialists. She needs to rule out any hormonal changes and endocrinology-related malfunctions before she can attack the cholesterol with more drugs. She thinks that since cholesterol is a metabolism disease and metabolism is usually so influenced by glands and their well-being, she wants to check these out next, given my most recent symptoms.

Now, I am waiting on my thyroid test, which should be done tomorrow, but I am not sure when they will call me with it. After I hear the results from that one I will make the first appointment with the first specialist.

My next blood tests for cholesterol and liver functions are due in 3 more months, again. Yippee…

The complete panel:

Total cholesterol: 304 (from 274)
HDL cholesterol: 37 (from 34)
LDL Cholesterol: 248 (from 227)
Triglycerides: 96 (from 68)

The last tests were in August. I have to believe that the summer diet, of all fresh herbs and veggies, as well as regular walks weekly, as opposed to the semi-sedentary life of the winter has something to do with it. But all the other changes in my body have gotten me worried, so an extra check elsewhere should not hurt, I s’ppose.

Another new thing from the doc's office is that I got my first ever prescription for GENERIC lipitor! I have no idea how much this one is, with my insurance, but I will let you know. I have been on lipitor for 10 years or more and it's been always treated by all insurances as a non-preferred drug. I am dying to see what the generic lipitor is to my insurance.

Hoping for good news for all, till next time …

The Glow in the Dark Test

(well, sort of ...)

I tell you what – they’re going to either stress me out completely or totally distress me doing so many stress(ful) tests on me this year!

The first one I had earlier was just a “regular” stress test – for the very first time! Usually, they have done just the “nuclear” one in the past. This year, the new doc decided to go with the “regular” one first, and then decided that it was not very conclusive, so he ordered a nuclear one, to follow, as well. More trouble for me, more money for them – is how I look at it.

Although I have done the nuclear one at least twice if not three times at my old doctor’s office, in NC, I discovered that this one, another state, another clinic, was slightly different than before. I am still not nervous about it, except for the IV, which I hate, but I was surprised about some things that I was not familiar with, really.

First, they refer to it as the “thallium test”, not the “nuclear one”. So, I am not quite sure whether the substance they inject you with, the one that glows in the pictures, is the same as before. The sensation of cold, when the “poison” goes into your body is the same, however.

The nurse also asked me if I am going to travel by plane in the next week or so. I told her no, but I also asked her why she’s asking – this was the first time I was asked this. She said it’s because thallium will stay in my body for that long and I can set off a security metal detector at the airport because of it. My eyes must have popped out of my head, because she continued: “Oh, no, don’t worry. It is not harmful to anyone around you, nor the environment, so it’s OK!”. This time, I could not stand it, and blurted out: “Harmful to the ENVIRONMENT?? Or OTHER people?! What about to MYSELF? I am a walking, rusting (no doubt!) robot for a week but this is not harmful to ME?!”. She laughed it off and said no, but … are you really convinced?! I am not, and I am not usually paranoid about what might kill me. Just sounds a bit strange!

So, the drill with this test is: you go in preferably early in the morning, definitely fasting. They hook you up to an IV and you wait for about 40 minutes in the waiting room, till the thallium gets through your whole body, I guess. Then, they put you on a table, to take pictures of your heart. You wear a gown for your upper body but you can be dressed in your own clothes from the waist down.

After the pictures, you wait for another 40 minutes or so, not sure why. Then, they ask you to come in the treadmill room. You walk on the treadmill, with them increasing the speed every 3 minutes and the incline, as well. You have to keep going till you reach your required heartbeat rate for your age – mine is 156. At about 146 I thought I was going to choke! But I reached my peak, nonetheless.

My chest never did become heavy, but my throat always chokes up when I am running, like someone is literally strangling me. My throat just becomes very, very narrow, all of a sudden.

While you are running, a different nurse injects more thallium in your IV.

Towards the end of the exercise, they lowered this old fashioned X-ray machine and made me put my chest right up against it WHILE I was running, with an IV in my arm, and stickies with wires stuck all over my upper body, to measure my blood pressure and what not. This was, once again, something new to me. I am not sure what the X-ray machine measures, but I honestly don’t see how 90 year olds do this.

After I reached the heart speed they wanted, they slowed down the treadmill and I was walking normally after that, in a stroll pace. When I stepped down from the treadmill, I was extremely light headed. My blood pressure went during the exercise from 120 over 60 to 147 over 98, and then, within minutes, down to 60 over 40! No idea why!

The nurse shot about 4-5 syringes of saline into my IV and I started to come to. I also drank a lot of water. She did not release me from the room till she got a “normal” blood pressure and the headache and lightheadedness subsided.

After this, I went to the waiting room for another 40 minute wait, and this time, I ate a breakfast bar – as I was told that the fasting part of the test was over.

After another 40 minutes, I went back to the room with the machine that takes the heart pictures. For the pictures, you lie down on a very narrow wooden (I think) table, with your arms folded under your head. You are told to not move whatsoever, even if it is just to clear your throat. The pictures will be blurry otherwise and they will have to start over. You lay there for about 15 minutes while this massive moving metal machine goes around your chest from right to left and shoots pictures of your chest. The pictures show up on a computer screen somewhere, in the room, but the machine blocks your view, so you’re not seeing anything. The machine is not touching you, and although it is terribly close, you don’t panic, like in the MRI tube, from claustrophobia. Not the same feeling at all.

And after the second set of pictures you are done!

After a week or so, I got a call form my cardiologist’s nurse and she told me that the test was fine and that my heart can withstand exercise, so I should continue exercising as much as I can, and come back for another regular checkup in 6 more months.

Mystery solved – and now I am happy that this is behind me, too!

It’s not too bad of a test, and if it is indeed accurate about spotting blockages and their severity is pretty harmless and noninvasive to be worth while in knowing what you’re dealing with. The biggest inconveniences are that it takes about half of your day (and time off from work, etc) and the IV is not very pleasant. And I almost forgot: they sand down (yes, as in sandpaper!) the spots on your torso where they stick the sensors for the EKG wires. They use a small piece of sandpaper to make sure no oil or other residue is under that sensor. When you peel them off, you will lose some skin!

Aside from that, and considering that a regular dental cleaning is more bloody and messy than all this, this is pretty tame. Just don’t get thrown out of a flight for transporting liquid thallium in you! Plan your test a couple of weeks in advance of your flying trips, I’d say, and good luck with the results!