If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

hcm petpeeves

Collapse

About the Author

Collapse

jujemendoza2002 Find out more about jujemendoza2002
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Eileen2345
    replied
    Petpeeves:

    (where to begin)

    -- the harsh chest pain when walking, picking up something or bending down and standing up.

    -- the head rush I get and shortness of breath if I do not bend using my knees.

    -- I'm so tired of being tired.

    -- cannot lay down on my left side.

    -- I'm always propped up.

    -- NO CHOCOLATE.

    -- NO ALCOHOL.

    -- not too much sugar.

    -- not too many carbs.

    -- leg pain.

    -- bloating like a blow fish everyday.

    -- A-FIB

    -- V-TACH

    -- and last but not least .... my husband (gritting my teeth)

    Leave a comment:


  • Ad
    replied
    Ok, now i understand the meaning of 'petpeeve' / to lazy to consult a translator every time

    Ah well, just like Jen, i positively absolutely most of all hate my irregular runs of A-fib - yes with a racing heart too. I'd rather be tired than having these - but hey they usually come when tired ah how bad coincidence.

    Oh life sometimes seems excellent yes: as i type this, listening over headphones on my laptop to some beautiful MP3's quasi streaming in over high bandwidth cable from a newsserver somewhere makes my old ticker a bit relaxed too

    Ad

    Leave a comment:


  • Burton Borrok
    replied
    Re: hcm petpeeves

    To tell you the truth Tammy, it’s kind of a game. I grunt, groan, and kvetch a lot, but I can’t come out with a good ‘Woe is me’ without breaking myself up. I really can’t take it all that seriously.

    Reminds me of a story attributed to Benjamin Franklin when he was our ambassador to France, trying to get the French to enter the American Revolution against the British, and the French were dragging their heals, trying to stay out of it.

    In those days it was a grievous insult to paint someone’s picture in the bottom of a chamber pot, and in frustration from his constant prodding, one day the king announced that he had Benjamin Franklyn’s portrait painted in the bottom of the queen’s chamber pot.

    Benjamin Franklyn immediately retorted, “Well, the location may not be all that great, - but the view is spectacular.” Old Ben became the darling of the court, and if you recall your history, he was ultimately successful in his mission. Sometimes you just have to have a sense of humor.
    Burt

    Leave a comment:


  • TammyC
    replied
    Re: hcm petpeeves

    Burton
    I'm sorry you had a bad day but glad that everything worked out. You have quite the sense of humour. I love it.

    Leave a comment:


  • Mark
    replied
    Re: hcm petpeeves

    Petpeeves:

    Having to sit up and try to fall asleep when I really want to, and need to, lay down and get some rest, but I cannot because of tightness in the chest. Is this a problem for others? I really have an issue with this. Last night and this morning was terrible.

    No more running. No more tennis. No more basketball . . .

    Yes, as many have already stated . . . uncertainty.

    Peace,

    Mark

    Leave a comment:


  • Lisa Salberg
    replied
    Re: hcm petpeeves

    Four simple letters...
    I H S S

    I - It is NOT idiopathic - we know where it comes from!
    H - Yes there is hypertrophy
    S - Subaortic - Well not all thickness is located in that region - some is apical
    S - Stenosis - NOT all HCM pts have stenosis

    The proper name is Hypertrophic Cardiomyopathy (with obstruction - in some cases)

    :P

    Leave a comment:


  • Quinn
    replied
    Re: hcm petpeeves

    My pet peeve: like many others is the uncertainty. The progression has been from modest symptoms to moderate. From one med to five. From no AF to too many AF's. From ignorance to increasing knowledge. From thoughtful caring health care to object oriented passage, from becoming comfortable with the new symptoms to getting more that require more changes, from thinking I understand something to finding out that it was only partially correct, from being elated to wake up from one more cardioversion to being told we don't know what to tell you may happen next...from trusting health care providers to being denied help because the provider did not know me or was uncomfortable...from being physically capable to unable to chase my kids in the yard....it seems that no matter how much I seek to understand or alter it is never enough and I can't know what is next. The uncertainty is challenging...

    Leave a comment:


  • mtlieb
    replied
    Re: hcm petpeeves

    A few of my biggest pet peeves:

    People who don't understand, or even try to understand what HCM is or how you get it, yet feel qualified to lecture me about how I should take care of myself. My cholesterol level is low, my blood pressure is 115/80, and my arteries are clean as a whistle folks!

    Having a mountain bike parked in the corner of my apartment that's only ever going to be ridden on pavement now.

    The uncertainty. This one seems to be a biggie for everybody. No matter how successful the treatment, there's always going to be a measure of uncertainty inherent to HCM.

    Having a head full of all kinds of wonderful things i'd love to do in life, but a body that doesn't always allow me to do them... like skydiving. Woo hoo! I always said that i was going to try that if it was the last thing I do. With HCM... it really might be the last thing i do! LoL. Maybe i'll just save that one for when i'm 96 and on my death bed. "Hey docs, there's just one more thing... "

    Jim

    Leave a comment:


  • Debbie
    replied
    Re: hcm petpeeves

    Shirley and Sarah,

    Thanks for your posts and your words of encouragement.

    It is hard. Sarah, you are right about pushing forward. Those who know us well and love us know our limitations and that we have to take a little longer to do some things that used to be easier. You are so right about having to slow down, like on hikes, and stop and "smell the flowers". There are times that I use that as an excuse to stop and rest so that maybe nobody will notice.

    Also I know that you have to keep pushing yourself, but your quote about "no effort no progress" is a real motivator. Thanks, sometimes we need those reminders.

    I learn from you all each time I visit the site. Thanks so much. And Shirley, you are not alone either.

    Best wishes,

    Deb

    Leave a comment:


  • Burton Borrok
    replied
    Re: hcm petpeeves

    Golly Gee,
    You didn’t think the story ended there did you. I got a call from the epilepsy clinic who wants to check out some information with our PCP before she contacts the insurance company to confirm that they really authorized the referral. Well, my PCP is in El Salvador this week on a mission. Either her nurse (who’s pretty sharp) will supply the information, or we’ll have to add a week to this project. I don’t know why the clinic doctor would organize and run a five hour seminar trying to attract people to the clinic, while his staff is trying desperately to keep people out.

    There’s more. Just as I was getting ready to leave the house I got another insulin delivery – but first, let me give you some background. My endocrinologist had me on both the short lasting Humalog insulin and the long term Vantage insulin. As my use grew, the doctor wrote two prescriptions, stepping up my 90 day supply from three bottles of each to five bottles of each. This was just before he left on vacation for the month of July. When I got the prescriptions home I noticed that they were both for Humalog, with none for Lantis. I crossed out one Humalog and wrote in Lantis, and sent them in.

    This caused a great delay at the pharmacy, and when I called they said that the doctor hadn’t initialed the change for the Lantis, so they couldn’t fill it. I asked them to put a rush on the rest of the order, then called the doctor’s nurse who gave me a 90 day supply of Lantis. The only problem was it was a half hour highway drive each way to his office.

    A few days later I called again, as they still hadn’t shipped the order and I was about out of the Humalog. This led to another trip to the doctor’s office to pick up two bottles of samples of that. Yesterday the order came – five bottles of Humalog. OK? Are we happy? I now had five sample bottles of Vantage, two sample bottles of Humalog, and the five ordered bottles of Humalog. I was set.

    Well today I got another shipment, just as I was about out the door. I received six bottles of Vantage (I now have at least a six month supply of this on hand) plus I got a number of my other prescription drugs which I hadn’t ordered, - but I guess they thought I needed them. I did send them prescriptions for three other drugs, as the previous prescriptions had expired, but they sent back a note saying I can order one on August fifth, a second on the fourteenth, and the last on the sixteenth. Yesterday my wife got one of her drugs from them in the mail.

    We can only order a 90 day supply of each of our drugs, and my wife and I each take a goodly quantity. I thought, “Wouldn’t it be much simpler to order all the drugs at once, and do it once every three months?” No, no, no. It seems we have to order a couple of different drugs every week. - Keeping track of who needs what and when has developed into a major project.

    Life can be a scream – sha-boom, sha-boom.
    Burt

    Leave a comment:


  • Sarah
    replied
    Re: hcm petpeeves

    Dear Debbie,

    It is tough, but you have a double-sided path before you.

    1. get the best care and stay in the best shape possible (harder 'en heck with HCM, but no effort, no progress)

    2. the past is past. you are who you are today, not yesterday. everyone slows down, some of just slow down faster. think about how much time you have to appreciate all that is around when you slow down a bit and investigate all you see on a hike instead of plowing through it.

    Reframe your perspective a bit, accept a bit, keep pushing a bit, and you should find a fine place to be---living life!!!

    take care,

    Sarah

    Leave a comment:


  • shirleymahoney
    replied
    Re: hcm petpeeves

    Debbie

    When i read your post is was as if you were talking about me, i feel this way allthe time and i have a hard time dealing with it , i have always been an active person for the past i would say 10 years now i have pushed myself to do and as the years go by it's getting harder and harder, you take care and you are definetly not alone

    Shirley

    Leave a comment:


  • Debbie
    replied
    Re: hcm petpeeves

    Hi everyone.

    Burt, I enjoy your posts and always read them with great interest.

    I have been a member of the HCMA for a while, but don't post much. Just want you all to know that I watch your posts when I can, I keep up with you in my own quiet way.

    Anyway, funny this post about pet peeves about HCM came on the website. I was just talking to my husband about them a couple weeks ago.

    We were on a camping vacation for 12 days. We live in Colorado, and our long camping vacations are something we've done for a long time. We are avid motorcycle riders (dirt bikes), love to fish, hike, camp, and just enjoy our beautiful mountains. But I have noticed in the last 4 or 5 years that it is getting harder and harder for me to do the things I love to do.

    Those would be my pet peeves:

    I hate that I want to go fishing, but the walking/hiking may be too much.

    I hate that when we're out dirtbiking, I get tired too easily and sometimes the rough stuff is just too physically demanding for me. Sometimes I just don't have it in me.

    I hate that I can't hike much anymore. At 10 or 12,000 feet, it's just too much.

    I hate the headrush that comes with bending over and trying to stand up again. Every time.

    I hate that so many things that I used to do are so hard now. Just everything... Housework, gardening, walking. It sucks!

    I also hate having to ask for help, or admit that things are hard. So many people just don't get it. I don't talk about my HCM a lot, so people seem to forget that it is a real factor in my life.

    You guys know. Many of you are right there with me.

    It's so nice to have this site to come to and see that I am not alone, and that there are people out there who understand.

    Leave a comment:


  • shirleymahoney
    replied
    Re: hcm petpeeves

    Wow Burt

    Now that was a story, maybe next week i will have a story i have 3 doctors appts so cross your fingers for me. i hope your Shirley is doing ok and how have you been feeling?

    Shirley

    Leave a comment:


  • jujemendoza2002
    replied
    Re: hcm petpeeves

    Burton, That is great that it worked out that you still get to see your cardiologist at his new practice and that it worked out to even be closer. It only sucks that you've had to deal with so much stress, I hope your wife feels better too, maybe now you can relax for a little while,huh? take care!

    Leave a comment:

Today's Birthdays

Collapse

Working...
X