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Venting

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JudyA Married,3 grown sons,4 grandchildren. Perm addy-Ohio/Tooele,Utah since Oct 2005,Dx HCM Dec 2005 Find out more about JudyA
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  • Venting

    ****Major Venting Alert****
    ( turn back now if you depress easily or like direct and short posts!)

    "I am sick and tired of being sick and tired". Last week I browsed through the "but you don't look sick" website and found their store and the slogans you could get on shirt's, etc This one truly describes my frame of mind at this point.

    I know that I am far from being "the most affected by their HCM" person on this site, but in my day to day matters I am affected more and more lately. I am surrounded by just the people in my small neck of the woods on a daily basis. People I see at church keep telling me how good my color is....And I am thinking to myself---Was I purple polk-a-dot before and they never told me? And if my color is so good, why am I back to having to bring only a very light purse and the lightest scriptures I have - or I feel wiped out by walking around the building?

    My husband is clueless about how to make me feel less of a burden when my asthma flares up and my HCM symptoms reoccur in response. When I am feeling bitter about all of this, he is a jerk- when I am in a more charitable mood I feel it is probable that he suffers from aspergers syndrome and is actually incapable of reading my facial expressions or my body language that indicate how I am feeling. Knowing this doesn't make it any easier to live with.

    Since I returned to Ohio in August, the level of activity I can tolerate has gone steadily down hill and I have been the recipient of so many smaller maladies, I think that they have truly sapped my strength, as well as my attitude. I had been involved in cardiac rehab while in Utah and had achieved some goals that made me feel proud of myself. Now it seems I am dealing with so many tricky family situations I haven't found the inner strength to make myself get out to use the treadmill- at the center where I have a membership. I think about going- and sit and think about it- often- but never get there- it is like I am frozen in inactivity. I am on Paxil for a history of depression already, and if it wasn't for that, I don't know how I would be coping at all.

    As my daily life is now- I work, then I rest so I can be well enough to go back to work- that is about it! Two weeks ago, my office asked me to do one shift, then another, then another, until I worked some portion of every day for 7 straight days!!!!! I only have myself to blame for that one! I didn't say NO!! It turned out to be way too many hours for me - and I am still paying for it. I gained at least 9 pounds in water weight, and can't seem to lose it, and after weeks and weeks of coughing from asthma and related breathing difficulties.- my eustation tubes finally gave up- and I ended up getting an ear infection like a child. The urgent care doctor put me on Omnicef for 10 days, so we shall see. I've been on the antibiotic for 2 days and I've seen some improvement in the color of the junk I cough up-(details withheld for the squemish) but I was extremely short of breath today. Has anyone ever experienced increased HCM symptoms while taking an antibiotic??

    Ya know - there is a saying that describes me right now- If I didn't have bad luck, I wouldn't have any at all!!!!

    And even as I am venting so pessimistically, I know that I am not going through anything like what so many of you have, or what Rob and Haley are going through, and I have had no sudden deaths in my family from HCM, and maybe - just maybe- I may be like HuskerJeff and have been misdiagnosed.

    I recently found out that through some strange twist, Dr Lever and the CCF is in-network for my insurance, unless I interpretted the website wrong!! All I have to do is call to make the appointment to go for the evaluation I have been wanting to have. But so many small things have been going wrong, I am afraid of something else happening and so- I am procrastinating making the appointment.

    Thanks for letting me vent here. I hope I can pull myself together soon and have some positive things to report. I learn so much from reading everybody's posts and I admire your positive attitudes- wish I were more like some of you.

    Judy

    *******Oficial end of Vent***********
    Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
    Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

  • #2
    Re: Venting

    Hi, Judy,
    I am sorry that you are feeling so bad and struggling with the feelings of rejection from the people around you. It certainly sounds like you need that visit to Cleveland is in order. You should not be fooling around with that extra water weight. That alone could explain your tiredness. But there may be other things that could be helped there. So - call today and make your appointment. I will pray that you get answers that can lead to your feeling better, which is more important than looking better to your friends.

    Rhoda

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    • #3
      Re: Venting

      I'm glad you can talk to us. Everyone needs someone to vent to. I hope you do call CC soon and make an appointment. If nothing else it can give you peace of mind.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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