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Wedding is over.

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Wedding is over.

    Well I am back and no longer to have intermittent daily distractions, albeit it was a wonderfull event to be distracted by. The many , many details and preparations for this one special day are now past. It was wonderfull , cold , without snow , rain or a hint of bad weather that could have made for some challenges to say the least.

    Many of the elders said it was a blast from the past , looking at her reminded them of my day when I too was 25 and getting married. She physically and personality wise has many of my traits. Well she was radient and enjoyed her day thoroughly . My new son in law was equally beeming. The day was long( for me) flew by for them. They are now at Disney World and she called to tell me the temperature is 80!!!! I hate the heat but, couldn't we use a little of that up in the north?

    I do not wish to take away the glory of their day and I will not share this with them but the day took a very big toll on me physically. I had always dreamed of how this day would transpire and how I would enjoy it. Being a realist , an optimist, and always diminishing negative by trying to impart more positive , I often these days seem to set myself up for a big fall. In the end I realize I have only dreamt of positive outcomes not factoring in the often impossible situations that an HCM person encounters in what for many is a festive, fun filled, occasion. Yes weddings are a lot of work and evoke a lot of expectation on the part of the core participants. I had a lot of help believe me and I never could have looked like I pulled it off without that help and, for all this I am eternally happy and thankfull beyond words. I am gushing with pride and happiness for my daughter and her husband.

    Today amongst the many memories of happiness and thankfullness for being alive and able to be at such a blessed event, I am saddened by the reality of how very , very difficult this was for me. I watched in envy as others did and enjoyed the wedding in ways I would have liked to.

    Don't get me wrong and I am sorry to add a solemn note to this post but it is what it is and I HATE HCM!!! It has ruined my plans and dreams and robbed me dearly as it does many of you. Today I just need to go here and get it out so the toxic nature of it goes away and I can feel in control of my outlook and look up again. The diverticulitis has been back again attack # 6.

    The topping on the cake.... Medicare notified me today that they will be reviewing my disability and determining if they want to do a full medical review. Of course I know that is exactly what they will do...more stress.

    Sorry for the vent .

    Best to all,

    Pam
    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

  • #2
    Pam it is ok to vent you heard mine last week, now that the big wedding day is behind you now you made it through it and it is time for you to recover and try to take it easy, i know you are not but i can say it anyway, sounds good right, i bet she was beaming i remember my daughter's wedding i cried and she was beaming also

    you take it easy ok

    Shirley
    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

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    • #3
      Pam, I'm glad things went so well and you were able to come thru for the bride and groom. I'm sure you'll be recovering for days to come. When the venting helps, just do it. You've earned your time. I do hope tomorrow comes with a sleep-in-late and a wake-up-feeling-much-better sort of day. Thinking of you, Linda

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      • #4
        Pam, I hope that you can rest this week and feel a lot better soon!

        Reenie
        Reenie

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

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        • #5
          Pam,

          I have often thought of renaming the HCMA to the WHHCMA the We Hate HCM Association - but thought the name was a bit of a downer!

          I am happy that you were able to be there with your daughter, even if you were not able to do everything you wanted - you were there and I am grateful for that. I often think of the day my niece and nephew marry - they will not have their mom there in the room with them. This is why I am so happy that you were there - we may not have you feeling 110% but you made it and this is a blessing.

          We are permitted to have the occasional "pity party" - so 'enjoy' yours and we will be here to grab your hand and bring you back to that positive frame of mind that helps us each get from morning to night.

          Peace to you my dear friend,
          Lisa
          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)

          Comment


          • #6
            Yes thank you all my friends, for allowing me to vent. I do feel better today . Amazing what a little rest will do for turning ones outlook around

            Pam
            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

            Comment

            Today's Birthdays

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