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ginnilea Find out more about ginnilea
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  • I am down

    So I am hoping I am not alone in this but I am down. Ever since I was diagnosed with this disease I go through this minor depression every once in a while. It is terrible. Everytime I decide, this is it, i need therapy or medications I begin to feel better and never go. So I told my PCP this and she said to call her next time this happens and go figure, she is on maternity leave!

    I guess I get down cause I worry about myself, my husband, my future. I get nervous because I don't want to get worse and I really want to live a normal life. I feel young at 22 and robbed of a lot of things. Even though I work at the Cleveland Clinic, I still feel all alone with HOCM.

    The worst part is all I wanna do is sleep, which is terrible. I could sleep my entire day away. Anyways, I know this is a downer post, please forgive me...

    ginny
    Heart nurse by day, Heart Patient by night

  • #2
    Re: I am down

    Don't worry darlin this is the place to vent and talk about our worries, we all understand well we all get that way from time to time, this is a good support group and believe me we know exactly how you feel, it does take time to adjust to this and some of us never do not to the point we would like .... so hang in there and come vent anytime

    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

    Comment


    • #3
      Re: I am down

      Everyone feels down from time to time. Living with a chronic illness makes it tougher sometimes too. We're here for you. Did your doctor leave anyone else to take her place? Do you know her well enough to call her while she's on maternity leave and get some advice?

      Reenie
      Reenie

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

      Comment


      • #4
        Re: I am down

        I diddo what Shirley says. We all feel this way but sticking close to your HCM family by reading , posting or not helps to bring ya back up. Sometimes we pull away because we don't want to belong to this club but we always come back cause we are among friends and with those who understand the most about what we are feeling. So vent all you wish we are all here for you. 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


        • #5
          Re: I am down

          Ginny,

          I know of what you speak... there have been times when all i want to do is sleep the day away, and in fact i've gone days and days at a time without even wanting to leave my apartment at all. Some of that can be attributed to being in CHF, and now recovering from surgery... but i have to admit that a lot of it has had to do with my depression issues as well. And like you, whenever i finally feel i've had enough of it and decide to seek treatment, i have a really good day and never end up going. Please feel free to post anytime you need to vent or want to talk with someone. We're all here for you.

          It was great visiting with you at the hospital following my myectomy! It meant a lot that you took the time to stop by and see how i was doing. If i had known your username here on the board, i'd have written long ago to thank you. Better late than never i guess.

          Please take care of yourself.

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            Re: I am down

            Hi Ginny,
            Once in my early thirties I woke up one night and began worrying about what would happen after I died. I worked myself up to the point that I was drenched in sweat and in a panic. A couple of hours later I did fall back into an exhausted sleep, but I know what it’s like to worry over nothing.

            Saturday I turn seventy-two. I have a number of life threatening illnesses, but I just keep on living and enjoying myself day after day. I do the best I can to take care of myself, but I also consider the fact that we’re hear to enjoy ourselves as much as we can, so I don’t go overboard on anything – moderation is a good thing.

            Having HCM can be scary until you realize that with normal reasonable care you can live a full happy life with it. Geez, you live in Cleveland and work at the Clinic. If you ever needed special care, your right in the ‘heart’ of one of the best places on earth for it. Be happy and enjoy your life. Be like your state – round on the ends and ‘hi’ in the middle.
            Burt

            Comment


            • #7
              Re: I am down

              CHIN UP my ticker nurse - Not because you shouldnt feel a bit down from time to time- but because you are not alone!

              We all have these times when we are not feeling ....well...like we want to or think we should. Take heart (pun intended!) that you are not alone and it will likely pass. HOWEVER sometimes it does not and then it is very appriopriate to seek out help from a mental health professional. Face it we all have a great deal to deal with - getting a little help is not a bad thing it is a good thing!

              Take care...and keep up the good work!

              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


              • #8
                Re: I am down

                Ginny, From one nurse to another , think about where we work and what we see on a daily basis. Remember how easy it is to get every one of those symptoms as you are sitting in class and learning about them? Then you get hit with the diagnosis like HCM, and your mind can really run wild. So often, you hear, "Well, at least you're a nurse so you know all about it." That's just not true, and even when you do know about it, you can't always make yourself be objective or sometimes even reasonable. You have a physically and mentally strenuous job, your meds are tiring and can even cause depression. Don't be afraid to call for the help you need, even if you are not needing it at the time you can accomplish the call. Get on top of things and maybe you can prevent the down times from going so low. Someone is covering for your doctor, explain what she told you before her leave and they may be just as helpful or refer you to someone who is. We are all here for you and wish you the best. Please keep us posted. Linda

                Comment


                • #9
                  Re: I am down

                  Ginny,
                  While I haven't spent a lot of time sleeping, I certainly have spent a lot of time crying as a result of this diagnosis. It is very frightening. I want to share what helps me when I'm faced with a situation like this. When I feel down during the day, I tell myself "Stop, I'll deal with it at 7:00 tonight." Then promptly at 7:00 that night, I take some time to acknowledge what I am feeling. I'm able to work and concentrate during the rest of the day. I've had two other very difficult experiences in my life that I've used this and it truly works. However, there is nothing wrong in seeking professional help. Maybe it is one of your medications. We live for today so do what you can to make each one the best it can be.
                  Nancy

                  Comment


                  • #10
                    Re: I am down

                    Ginny,

                    You are definately NOT alone in your feelings. Today I went shopping in Columbus for the day with my daughter, sister and nephew. We haven't done that since we took my daughter to buy a prom dress 6 years ago!
                    I was miserable, but kept chugging away, trying to keep up! Melissa kept asking if I was ok, and I kept telling her "oh yea...I'm fine! I was in the dressing room trying on clothes and thought I was absolutely going to pass out! So, I sat in the dressing room for about 5 minutes just sitting there...trying to become "un"dizzy, "un" lightheaded and have my heart stop beating all funky! (that's probably not the medical term is it?)

                    And, as far as following through with Dr. appts. I do the same thing! In June was the first time that I'd seen my cardiologist in 3 years. Ridiculous, huh? I would call and ask to have my prescriptions for Verapamil and Norpace refilled yearly, with the promise that I'd make an appt. Finally, the nurse told me that if I didn't come in to see my Dr. that they were going to release me from the practice, that being monitored is very important, blah, blah, blah...! It wasn't that I have felt good over the past 3 years, I just didn't go. He ordered an ECHO and holter monitor when I was there in June, I cancelled the appt. and said I'd call back to reschedule. Still haven't. My feeling on a 24 hour Holter monitor is that it is such a waste of money (for me anyway). It never fails, I feel fine during that time!

                    There are days that I feel really down, too. As you can probably tell by my negative attitude and rambling, today is definately one of them!

                    Fortunately, everyone here UNDERSTANDS! We're all very lucky that we have such an awesome support system here and that we can whine when we need too! I rarely post, or reply to posts because I just don't have the knowledge to share with others that so many people have. I have nothing to contribute. I read everything though, and have learned a great deal. Still have a zillion more things to learn!

                    If nothing else, I want you to remember that everyone has bad days...physically and emotionally. This wonderful group of people will always be here for you. Keep your chin up, tomorrow WILL be a better day!

                    Rene'

                    Comment


                    • #11
                      Re: I am down

                      Dear Rene,
                      How clever of you – not seeing your cardiologist in three years. I guess you really showed him, huh? Now I see you’re trying for that elusive fourth year. I guess after that you will have to find another cardiologist because this one will have dropped you, and you’ll still need those prescriptions renewed. Or do you plan on dropping the medications also?

                      Get a grip, girl. What are you trying to prove – that if you don’t take care of yourself the condition will go away? It will you know, - but I don’t think your family will be very happy with the result.

                      I hope you realize that I normally don’t yell at people, and I don’t like the experience. About the holter monitor, most of us know that it is the magical cure for many different heart ailments. When you’re wearing it try doing things normally – the things that you have difficulty with – you just may overcome the magical cure properties of the device and get some readings the doctor can use in your care.

                      Please – make another appointment with the cardiologist, and this time, follow through.
                      Burt

                      Comment


                      • #12
                        Re: I am down

                        Ginny,
                        You have NO IDEA how normal you are. I am having a bad HCM week myself. My neice is visiting me this week and just doing extra little things like taking her swimming and to the mall when I get off work off kicking my butt . My whole family has always thought of me as the crazy lively one, but Im not feeling too lively right now. I am sitting here at work today dreading getting out of my chair. I am only 30 (might seem old to you but seems young to me). I have a 2 year old to raise and husband who is 30 going on 3. I worry alot about what would happen to my son if I am not around. Personally I think my husband would take him to Hooters every day and to church once in a blue moon . Not exactly a mothers dream come true!! It really gets me down and worried sometimes. I just have to constantly remind myself that sticking around is worth fighting for. Keep coming here and reading posts. When I compare myself to my friends and family I get a little envious but when I see that others are having similar and sometimes much worse problems it helps me put things in perspective. You are not alone. There are so many people here who understand and care. Come vent whenever you need to.
                        Noone is guaranteed tomorrow. There are 15 year olds who are healthy as a horse and die in car crashes and 80 and 90 year olds who have lived long happy lives even with problems like HCM. What is important is that we are given today. Make the most of it and the future will take care of itself (... and yes I often need to take my own advice, but I believe its true). Keep your chin up and come here for support often as you can!!
                        2.6 Septal Measurement
                        ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                        "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                        ~Steel Magnolia's~

                        Comment


                        • #13
                          Re: I am down

                          Ginny, we certainly do understand as you can see from so many responses. A couple of years before I was diagnosed I spent a couple of years going to a therapist and part of that time seeing an absolutely kookie psychiatrist so I could get on antidepressant and antianxiety meds. Several times during that time I said to the therapist that I really wondered if the whole thing might be physical. But I was in an extremely stressful work situation and I was dealing with issues from my childhood, so she always dismissed that. In spite of all the things that I have had go wrong in the past couple of years, I still feel better than I did then. So, getting help for your depression is not something to avoid and if your PCP is on leave, find someone else who is not. You would not allow your leg to not get set if you broke it just because the PCP was unavailable!

                          Rene', as far as your situation, what do you think is going to happen if you get an echo???? I can understand the Holter because that has also been my experience and that of many others here. But, an echo? After three years?? I think you are way past due! So, get back on that phone and reschedule at least the echo!!!

                          Rhoda

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                          • #14
                            Re: I am down

                            Rene',

                            I understand how you feel about going to the doctor. My husband probably wouldn't go if I didn't badger him. He hadn't had an echo in about 2 years and didn't think he needed one for another few years but when he saw a new cardio a few weeks ago they did one in the office so that alleviated another trip. I know we all sound a little harsh, but we worry about you. Please don't take our concern as anything other than caring.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: I am down

                              I really, really wish I hadn't posted.

                              Just to clear the air...I'm not trying to "show" my Cardiologist anything...or anyone else. But, as you all know, ECHO's are expensive, even with insurance. I DID go to my appt. in June. He listened to my heart and we talked a bit. He had no recent tests to look at to give him any info. That's when he scheduled an ECHO and holter monitor.

                              Rene'

                              Comment

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