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discussions rise up!

NewAllie
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I just love when an old discussion surfaces. Being a bit of a newbie still and even though I often spend hours reading streams from past discussions and journals entries, most surface as hidden treasures I had no idea were there. Take the medic alert run...I had just found that yesterday. Of course with my continues forgetfulness, I'd already forgotten my yesterday's resolve to order one. Then the "You Know you have HD when..." I should print that one out and use it for my daily devotional! If I started each day laughing that hard, I don't think I'd spend near so much time on the pity pot. I guess the resurfacing means that I'm not the only one who reads and reads here, educating myself, comfortng myself, and laughing at myself and this new way of being. You ladies rock. Love, Allie

Explore topics in this discussion:

Surgery Burns Lopressor Bruises Meditation Beta blockers Plavix Crestor Stent Zocor Stress Heart disease Childbirth Aspirin Coumadin Diabetes Alzheimer's disease Pain Heart attack Dieting

21 replies

grace5

Hi Allie!
I love it too when the old posts pop up to the surface, it's great to re-read them.
One thing that Laura suggested a while ago is that us 'oldies' re-read our first posts, now that was an eye-opener, was that really me? It's amazing how we change and grow and get educated and so much stronger, this place and the women who inhabit it really is/are amazing.
I love all the people in my world but not one of them knows what goes on in my head when it comes to my 'event' it's not like childbirth, get a bunch of women in a room with a newborn baby and you'll get every contraction every stitch and tear and every gruesome detail from every woman there, say 'I had a heart attack' and just see what happens! ;-)
That's the beauty of this 'club' we're actually interested in every twinge and every symptom, there's just no other place quite like it.
Love,
Lidia xx

NewAllie

Amen to that. I barely recognize me from just two months ago! I barely recognize me from one day to the next or even hour.
I spoke at church yesterday. There is a woman there who had a bypass two years ago and she was rolling in the chairs laughing at most of what I said while the rest of the folks cried.
And I so agree about it being different. I do want to know, every detail. I feel so humbled by the fact that this has been going on with women all this time, my whole life, and I was oblivious!
I feel this crazy need to educate myself more and more. Even when I read until I'm overwhelmed one day, the next day I'm googling again.
I am so grateful I found this sight. Every day, I am grateful. Another thing I mentioned Sunday was my inability to yet have a normal conversation with anyone. Every conversation leads to some mention of my heart, or scar or drug or test...but no glazed over looks here or pats on the head or even mention that I've mentioned this or that before.
And just as I need to tell it over and over, I need to hear it over and over, for I find I can take in information in tiny pieces and what I read yesterday means something else to me when I read it today. What I thought didn't really apply to me yesterday, I realize is just like me today. As I educate myself, I understand more of what is written here and each day that goes by, I understand what is felt here as well.
I have cause for a bit of celebration today. A year and a half ago, I gave up Diet Coke. All the horror stories finally got to me and thinking my joint problems just might improve, I put aside my favorite beverage.
Well, that was tough, not as tough as putting down the cigs, but darn close. It took at least six months before I enjoyed drinking anything besides a cup of coffee. Sadly, none of the joint symptoms improved. In fact, since stopping the Diet Coke, I've been sicker than ever in my life. In fact, this is really the only
"sick" year I've ever had. Today at lunch, Lisa and I both had a Diet Coke. It was delicious! With the addition of all the meds, the limitations in my activity, the restrictions in my diet, the not smoking, I was feeling like I was having to give up everything I loved! But now, I have Diet Coke back! What a thrill!
On a bummer note, I may have broken my foot. I whacked it getting into bed of all things, on the nightstand. I have an appt with an ortho doc in the morning. It doesn't feel so bad, but looks horrific. that could just be the Plavix and Aspirin. Swollen too, though.
What a library of good books this would be, if everyone put all their posts into books. We could all give them to our cardiologists for Christmas. Nah, I'm finding a new one, doc, that is.
Got my medical records in the mail finally. All those tests they did before I left the hospital last month that he said were all normal, were all abnormal. I'm very anemic, electrolytes all low, ANA positive, C-Reactive Protein high, all the inflammation stuff high, Troponin high (I would guess from two caths oin two days). Anyway, for someone who didn't need another sign, I got one.
Have to laugh about it though, at least for today.
Love, Allie

grace5

Hi Allie, I'm raising a glass of diet coke to you, Cheers! ;-)
First I must just mention Arnica cream or gel for the plavix bruises, it helps to shorten the black/blue/purple stage by several days and helps reduce swellng, I did an experiment a while back on two bruises, one on each arm, done while helping our kids move house and carrying a large box. Does that sound slightly mad?! Oh well, maybe I am! The whack on the ankle is probably what you said, the plavix, bruises aren't just bruises anymore, they look horrific, big lumps and swellings and all the colours of the rainbow.
So, you're hooked on gathering information about all things heart related :-) when I first started this journey I was so scared that I sometimes couldn't even finish reading some of the posts on here, ignorance was bliss, but not for long, now I'm actively seeking out information since discovering how ill-informed some of our so called experts really are, now knowledge is power and hallelujah for the world wide web!
I'm sorry you've got yet more stuff to worry about, I hope your new doc (when you find him/her) will help.
I take VitC, 1000mg daily, more if I think I'm getting a cold, and fish oil too as well as other stuff, I'm a fan of alternative medicine, although to my mind it's the new stuff that's the alternative to the age-old medicine practised by generations before! I've pasted the next bit from an article about inflammation:
Vitamin C. Long recognized for its anti inflammatory properties, the effects of vitamin C are enhanced by other nutrients. In a study of people exposed to simulated sunlight, researchers found that vitamin C and E worked synergistically to reduce skin inflammation. In a cell study, Italian researchers noted that quercetin and vitamin C worked together to protect cells from inflammation-induced damage. Daily dosage: 1,000-2,000 mg.
I guess I should, as always, mention that you should check with your doc before taking anything.
The Linus Pauling theory fascinates me, a nobel prize winner, but died a laughing stock because of his belief that heart disease could be cured, if you have time just google his name, there's a lot out there!
love and hugs, oh and bloody well done for speaking at church yesterday and for staying off the ciggies! I am impressed!
Lidia xx

NewAllie

I can't believe I never heard of Linus before. What a guy! Two Nobel Prizes... I've taken large amounts of Vit C (never 10,000-20,000mg though!) at times in the past, mainly for cold prevention or to counter the smoking (Dr. David Hawkins, big on kineseology, says 5000mg per day counters all ill affects of smoking).

Bought coq10 today, started tonight. Already taking the fish oil. Added a multivitamen after finding out how off all my blood work was. That's still burns me up! For him to flat out lie!!!!!....Also, Lisa and I are both adding up calories...taking your advice. I've gained 10 lbs since bypass in Feb. Never had to worry about weight before. Supplements outweighing drugs now, that feels good.

Foot fine tonight except looks like a very ripe peach, so no ortho needed. It amazes me how fast my foot can heal with so little blood supply- both femorals and illiacs are completely blocked- collateral circ keeping legs going. Right toes turn purple sometimes and always cool.

You'll be so proud, Lisa's doc put her on Zocor about six weeks ago. Her numbers weren't that bad and I shared with her a lot of what you've shared. Plus, I was on Zocor first and it brought my HDL down along with LDL. Sure enough, after four weeks, her HDL was lower. She took herself off of it. It had also messed up her coumadin which has been so hard to get right.

I'm gonna keep digging...the inflammation aspect feels like on the right track to me. Especially as how agressive this disease seems to be in me. C Reactive Protein was up, just makes sense. Is there a reason you take the 1gm of Vit C?

I appreciate all the digging you do and your sharing it. I wouldn't have known where to begin.
Love, Allie

MMaslek

Lidia,
You want to check with your doc again about the C & E. I was on high doses of both & they pulled me because of conflicting reports. Especially the E. It can be harmful to the arteries. Double check because I don't remember the exact reasons but I do remember it turning into a big No No. Maybe something new has surfaced since they dc'd me.

Amy

grace5

:-) Keep digging Allie, and please pass on anything you find. We're all intelligent grown women here, able to read and process information then make our own judgements and decisions.
The VitC, I think I started on 1g a day about 15 years ago, as well as garlic, evening primrose, multi vits and minerals, I had a full time job and a house full of waifs and strays at the time, emotionally battered teenagers who wandered into my life and stayed for a few years (my kids invited them) a big rambling Victorian house and 9 people to feed, it was great fun but I was picking up everything, one cold after another, I know people doubt the power of VitC but I can honestly say I haven't had a bad cold since, just a snotty day or two here and there, it could be the placebo effect, but who cares! I also read that you need 30mg of VitC for every cigarette you smoke, I've always been able to choose whether I smoked or not, no money = no cigarettes, so I could stop and start depending on finances or circumstances except when stressed, then they were always my crutch, my lovely saviours of sanity!
Not being told the truth about your blood work is shocking, I'd be furious too. All things medical are shrouded in mystery, hence the reason for all this digging we have to do!
I'm glad your foot is better already, and Lisa, in my humble opinion, made a sound decision.
Beta blockers can cause cold extremities by the way, which doesn't help in your situation!
Thank God for collaterals, mine saved me from a second stent, I often visualise my collateral gang re-routing and joining up like a giant motorway bypass system, I'm quite proud of them for doing such a great job and kicking into action, quite a feat, that's why I want to give them all the necessary nutrients to enable them to keep up the good work. :-)
I like the positive mindset you have, I think this digging and educating ourselves gives us a sense of control again, there is a civil rights gospel song with the words 'we shall overcome' that should be our anthem!
Joan Baez below!
http://www.youtube.com/watch?v=RkNsEH1GD7Q

Love Lidia xx

grace5

Hi Amy! Thanks so much for your concern, I don't take extra E, just what's in the multi, but I checked out the C, below is one of the things that came up. Don't you wish they'd make up their minds?!
I see the research below as a reason to take VitC, but there are other articles totally against supplements, it's so hard to know what's true and what isn't!

Berkeley - Vitamin C supplements can reduce levels of C-reactive protein, a marker of inflammation and chronic disease risk in humans, according to a new study led by researchers at the University of California, Berkeley.
Participants who took about 500 milligrams of vitamin C supplements per day saw a 24 percent drop in plasma C-reactive protein (CRP) levels after two months. The study, published in the April issue of the Journal of the American College of Nutrition, is the first time vitamin C has been shown to decrease levels of CRP, a biomarker that has garnered increasing attention among health researchers in recent years.

"C-reactive protein is a marker of inflammation, and there is a growing body of evidence that chronic inflammation is linked to an increased risk of heart disease, diabetes and even Alzheimer's disease," said Gladys Block, UC Berkeley professor of epidemiology and public health nutrition and lead author of the study. "If our finding of vitamin C's ability to lower CRP is confirmed through other trials, vitamin C could become an important public health intervention."

Inflammation occurs as part of the body's defense against infection or injury. The body triggers the production of inflammatory cytokines, such as interleukin-6, that then set off the production of CRP by the liver.

"CRP levels can go up 100-fold within a short period of time as a reaction to an infection, but they then drop back down rapidly after the acute infection passes," said Christopher Jensen, a research scientist in Block's lab and co-author of the paper.

"It's not clear how vitamin C was able to lower CRP levels for people in this study," said Jensen. "One possibility is that vitamin C may be suppressing the production of cytokines, but that needs to be investigated in future studies."

Lidia xx

NewAllie

Thanks Amy,
I haven't added anything except the coq10 and a multivitamen. I was already taking Omega 3. I tried many times over the years to regularly take supplements, but never could stick to the plan for more than a few months. This medication taking is a real stretch, then adding supplements to the mix...I look in the mirror and ask, "who is that?" I appreciate the note encouraging caution. Not only do I want to get the facts, but also not do more than I can or will stick with. Blessings, Allie

NewAllie

Lidia, Go Joan! That was great! It does indeeed feel like a battle with the doctor.
Your house when kids were teens so sounds like mine back then. Always had extras at dinner. Became known as the "Queen of One Pot" as I could take whatever I'd planned for dinner, put it all in one pot and somehow stretch it to feed the masses. No calories counting in that system!
I love your visualization of the collaterals. I'm pretty proud of mine as well. I keep reminding myself that the arteries in my heart can do than, not just belly and legs.
I use to go for a few days without smoking, sometimes a week or so, but never more than that. I could cut back to a couple each day for long periods, but I'd eventually return to my pack a day routine. It's been almost four months. I miss them still! They were my stress buster and my friend.
It's also been almost four months since bypass and I had one of those moments this morning when I looked down at my scar in shock once again, thinking, "I can't believe this has happened!"
Lisa and I were looking at pictures yesterday from last year, even last Christmas and realizing I didn't look well at all in them. I don't think I look really well now, but clearly I wasn't for quite some time. Amazing how I could blame such physical symptoms on not being tough enough or strong enough.
I may not be tougher or stronger, but I sure feel smarter now. I admire your toughness and willingess to speak it.
Love, Allie

grace5

Hi Allie!

Those were the days, happy times, life is quieter now, until they all come together with their partners and babies then my tiny house is splitting at the seams.They say hindsight has 20/20 vision don't they?! Funny how you don't spot the signs in yourself, yet if a man were running around like a headless chicken overworking and getting stressed, looking worn out and maybe smoking and drinking too much the world and his wife say 'he's a heart attack waiting to happen' yet us girls just get on with it, and are expected to!
Do your best to stay away from stress as much as you can, in my opinion it's the best thing you can do.
The early days are tough, I remember being quite surprised when I woke up in the mornings, I believe we survivors suffer from post traumatic stress as many survivors do, we seem to have the same thoughts dreams and terrors anyway, it takes a while for the shock to lessen and the grief to subside. I compare it to the loss of a loved one, in the early days you're locked within yourself thinking about nothing else, the world turns without you, day by day it gets easier until one day you realise you haven't thought about your heart at all, that is a beautiful day!
Love,
Lidia xx

NewAllie

You describe it all so perfectly. Locked with yourself. I don't think I've ever spent so much time with me before. As for the post traumatic stress, the strangest things send me into panic, the phone ringing, the title of an email, walking back into the hospital yesterday (tracking down all those records), not to mention pain.

A day without thinking of my heart. I've joked about not being able to go an hour without talking about it. I look forward to that day! I had to eat a few nitro yesterday, so I'm really pretty glad to have today, no matter what I'm talking about though. It's all relative I suppose. I'd spent the day before pushing myself to thte edge over and over, aggravated that the edge was so close being in bed! Nothing like a little gratitude to be breathing to put it in perspective again. I see a new cardiologist next Thursday. Once word got out I was planning to go to Cleveland, the advice started pouring in from friends and such. The biggest refrence for thsi guy came form a woman who handles catastrohic illness cases for an insurance company. She said, "He's the only good cardiologist in the state." He sounds too good to be true, so I can't wait to meet him. Even his receptionist was wonderful. See? There I go again. My mind knows only one route these days, straight down to my heart. How long has it been for you again?
Love, Allie

grace5

Great news Allie, I hope this new cardio is 'the one'!
Looking forward to hearing about your visit with him. I'm two and a half years down the road, still have rare dark days of disbelief, mainly caused by resentment of the meds that made me feel rotten. I thought I was invincible, the healthiest person I knew! I don't like the idea of ingesting stuff that re-jigs my workings but since paring them down I feel much like I used to so I'm happy 99% of the time. My event doesn't compare to yours in enormity, you really drew the short straw, I don't know how I'd feel in your shoes, you're doing remarkably well, mentally at least ;-) As for talking about your heart, well isn't that what this board is for? People used to kind of blank out when I got onto that subject, I was so self obsessed I hardly listened, just waited to jump in and change the subject back to me and my ticker, I'm appreciated for my listening skills, I think I upset a few so called friends, they drifted away, actually, they didn't drift, they ran!!
Allie, you definitely find out who your friends are!
Love Lidia xx
And in case you don't pop in before, good luck for Thursday!

NewAllie

It's sad really, how when we can no longer provide whatever it was we provided for someone, the relationship goes away. I guess that's fine as I have a shortage of energy anyway...just me and those closest is about I can give any energy to. Don't know what I'd do though without this site.

I've been reading all morning about fish oils, krill oil, green lipped mussel oil, DHA/EPA...what a cyber debate is going on out there!
Also reading 2009 best hospitals awards, found mine went down from 2008 but the closest to our home went way up in the ranks. That's a relief. We'd pondered what we'd do if nitro didn't do the trick...thought we'd have to drive ourselves so not to risk being taken to this one so close with such a bad reputation (and bad personal expereince there too). Anyway, a small comfort! It's safe to dial 911 now.

I guess I'm lucky not to be on many drugs, Crestor, Lopressor, Plavix and Aspirin, down from seven. All the other pills are supplements. It's so hard to know what's from what, drug or surgery or diagnosis.

Thanks for the good wishes about the new doc. I'm excited too. Almost feels like I'm going on a vacation I'm so excited. That's either sad or scary.

I readon one of the posts where you love the Big Mac and a cig for dessert. Last night, Lisa was cutting up veggies for our low cal, low fat dinner and she says, "I thought we were going to have whatever we wanted once a week. Shouldn't tonight be the meal?" I agreed and we selected pizza. We did eat a salad for starters and then relished every unhealthy bite of that cheezy piece of heavenly bliss. A Big Mac sure sounds good today...
Love, Allie

grace5

You gave me Homer Simpson moment, Pizzaaaaaaah! It's mediterranean isn't it? ;-) I make my own, on a thin base, tomato paste, very good for you, onions, excellent, red pepper, green pepper, mushroom, actually everything except maybe pepperoni, is good, even mozzarella cheese (in moderation if you're feeling virtuous!) I hope you enjoyed every bit, a well deserved treat!
Try this, first a fresh wholemeal bread roll, buy a piece of lean beef and use a metal bladed gizmo to grind it into mince, form that into a burger and grill, add loads of lettuce and tomato then top with home made mayo made with egg yolk blended with virgin olive oil and a splash of vinegar. If you want cheese cut a thin slice of real cheddar and lay it on the burger. Voila, a healthy BigMac. You can skip the dessert cig, or do what Evie does and eat it. ;-)
You're a survivor Allie, keep researching, stay positive, enjoy the good bits and laugh as much as you can, and keep posting, I love to read your posts!
Lidia xx

NewAllie

A healthy pizza and healthy Big Mac?I must go to the grocery store today! I think it is cheese I have missed the most and the thought of it's gooeyness can drive me to want to dive off the low fat wagon more than the thought of chocolate. I never thought I'd say that! Lisa has lost ten pounds and I've lost zero. But, I haven't gained anymore, so that's a good thing I guess. I had a real bummer day yesterday...just fell in that fatalistic hole for some reason. Much brighter today. May have to journal about it later just to sort out the mess in my head.
I love your posting's too, they either make me laugh, help me not feel alone, educate me or inspire me, often all of the above. I hope you're off to a grand week. Love, Allie

grace5

Hi Allie, it's all peaks and troughs isn't it? Well done to Lisa!!!!! (I'm jealous) At least you haven't gained Allie, small mercies? ;-)
I just hate dieting so I don't, I don't do scales either, much to my doc's annoyance, my jeans tell me all I need to know!
Sorry you had a bad day, you're pretty good at bouncing back, that must be a part of your cheery personality, I hope the dark days don't come too often. You've got quite a mountain to climb, I hope your new cardio will give you a hand, not long now til you meet him, that'll be another hurdle jumped, okay then, cautiously stepped over!
The journal is a good idea, I wrote a couple of times I think, it's a great way to offload and make sense of things, better then talking to yourself out loud anyway!
I hope the day continues to be kind to you!
Hugs,
Lidia xx
PS. Thanks for the kind words!

NewAllie

Hi Lidia,
I think the not dieting is wise. I never had scales in the house till now. It seems that all this calorie counting is mostly making me hungry. The good part is I'm becoming much more aware of what I eat and noticed I don't spend much time in the middle of of the grocery store. I've never really needed to diet before, I guess that's why is so maddening. Maybe part of my new normal is there being more of me. I hope not. I'll stick to it though as it's been great for Lisa and I do feel like I'm doing everything I can do for myself right now by eating better.

Yes, I guess journaling is better than talking to oneself, if for no reason than it allos me to see my thoughts for a longer period of time. Hmmm.

By the way, we went out to eat with lots of family and extended family last night and I only vaguely mentioned my heart once. And I only thought about it a dozen or so times. Things are looking up!
Love, Allie

Linda_RS

I appreciate your reference to not talking or thinking about heart disease. I am anxious to get there. With only a little over a month under my belt, I am still hearing lots of advise and interest from friends and family. I still think of where and when "the event" happened.

While I appreciate the support from my family, I don't want my heart condition to determine who I am.

NewAllie

Hi Linda,
I laugh at myself about it, but in truth, it was a little scary to me seeing how hyperfocused I was on my own body and all the events of the past few months. Just the difference that alone was in me was extreme. I went from being so busy being and doing for others, working 65 hours a week, never saying no to any request of my time, energy or heart, to having to pay attention to my own body and heart in particular or die. I guess the pendulum has to swing far in the opposite direction before it can settle into a more balanced and healthy medium. I don't ever plan to return to the me that ignored my own heart, in so many ways. It is amazing all the advice that comes in. It's also interesting to me that I'm open to advice form here, women who have been there, but I shut down, walk away in a flash when someone starts telling me about some herb or diet or book or meditation or CD or doctor who has never had a challenge with their heart. I laugh about the glazed over look my family can get when I relay to them my latest cyber discovery or latest body twinge, yet I know I have that same glazed look when the healthy hearters start giving advice. Just a comical self observation.
As for not letting the heart condition determine who I am, I think mine is helping me see who I really am. And it's clearly not what I do or living up to others expectations of me.
Love, Allie

Linda_RS

Allie
I am enjoying the open and candid conversations from like women on this site. I am feeling like there is a community of women very similar to myself. I too, have lead a hectic life style. I never say "no". I am sure that contributed to my heart problem. I never thought I needed more than 4 hours of sleep.

I had to seek professional help to find the balanced and healthy medium. I am not there yet. It isn't as easy as it looks. I still want to do it all.

I applaud you. Please stay in touch. Linda

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