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A not so good hcm day for me it gets frustrating


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dreamcatchinglady Find out more about dreamcatchinglady
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  • A not so good hcm day for me it gets frustrating

    Hi everyone I find myself kind of distraught today. We have an exercise bike here that my dad set up in February and at first I was really good and on it often. I was on it 2 days ago. I was proud I did 27 minutes and I felt powerful and almighty. Today I don't feel powerful and almighty. I got on today and could only do 3 minutes. My body feels really tired today. My pulse has been in the 80s and 90s all day and it was a struggle even to walk down the drivewayto get the mail. I have been short of breath and very hot . I try to remind myself that I gotta take things day by day and remember that everyone has good and bad days who has hcm. And remind myself that a heart will come one day.
    There are good things that I am thankful for. That I am alive, I can walk, I have a home with my parents and two dogs,and I have food. So there are good things. But I do get really depressed.I felt like pampering myself today and going for a manicure and pedicure but I couldn't even get up the energy to do that and I felt too dizzy to drive.It seems some days I have so much on my plate that I just want to scream. Just like the picture.
    I am going to look into counseling next week but I am crossing my fingers that medicaid will pay for it, if not I will not be able to go.Tomorrow is a new day I keep trying to remember. I am getting my hair done in the morning.I am sorry everyone I just really needed to vent . Thanks for listening.
    Kimberly K. Plaster

  • #2
    Kimberly , you vent all you want . We are all hear to listen. There is not much we can offer , but we can all listen and be supportive to you. Venting is much better then keeping it all bottled up inside.

    You are in my thoughts and blessings.

    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


    • #3

      I know what you are feeling i walked to the store with my dad which is 87 and he did it better then i did i was sooooo worn out from it that i was in bed by 9:00 pm lastnight, and i'm very tired tonight too i went grocery shopping which i shouldn't have, the visit i had in Minn with Dr. Maron staff told me nomore exercising because of the chest pain and sweating i was doing and it was on the easiest setting my hubby took my bike apart

      but you hang in there ok

      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


      • #4
        Hi Kimberly,
        Listen girl – you P.S. and Moe N. all you want. Some days you got a right to sing the blues. I got a free membership to 24hour Fitness centers from my insurance company. I tried to do the bike and got into trouble. Then my cardiologist told me to only do two minutes at the lowest level settings – if and when I can. I did that for a few times, but this month I’ve only felt up to it once – and the second minute was tough.

        I am now on a 75 microgram pain patch which lately has had me feeling pretty good. Today I took my wife to the mall, and we went shopping with me on my scooter, - but I still got into trouble. I had to take another Lortab on top of the patch, and my back, right hip and leg are now still quite painful. Some days are just like that. When I finish with these postings I plan on taking a nap, and then I’ll dye my wife’s hair – if I don’t fall down in the process. After that it’s sitting on my rumpled rear and watching TV until bed time. Tomorrow, it’s lunch with friends, and I hope to get in a couple of hours at the ‘Talking Books’ for the blind. (I do the tape repairs.)

        I don’t know about you, but I feel better letting off some of the steam. It sure helps a lot, doesn’t it? Well, let’s both hope for a bigger, better, brighter tomorrow. Just do what you can, and ‘ride with it’ on that bike of yours. By the way, it’s good to hear from you again,


        • #5
          Kim, that is why we are here so you can vent on those days you need to. Hopefully tomorrow will be better. Do try to take baby steps and not do 27 min at once on bike. I think when you recuperate from overdoing maybe a couple of 10 min sessions would be less exhausting on you. We do pay for over doing. As far as counseling if Medicaid will not pay do you have a pastor or lay person at your church that could listen. Remember we are all here.

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.


          • #6
            Midge is right - I find that when I have a good day I want to do it all - - which is followed by several bad days in which I can not do anything - so I have learned that on those good days NOT to do it all..but to do some - and then the next day I can do some more and so on and so on - - In the long run I get more done.

            Hang in there - get some rest and tomorrow will be better.

            Big hug
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)


            • #7

              Remember we will be able to do all of the exercise we want when we get our hearts. Don't stress about it now just keep trying to walk around the house each day is good enough. Hope tomorrow is better and remember we know how you feel.

              Take care and God Bless!