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.

The Long and Short of it all

Collapse

About the Author

Collapse

Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • The Long and Short of it all

    Well,

    First off I would like to apoligize for not posting in such a long time. Life as of late has not been good. My chest pain had been getting to the point that I was getting severe pain with very little exertion. I was going in and out of CHF and I got diagnosed with gastricparesis. Which is a type of parylisis of the stomach in short. My quack doctors here were very little help. Actually, they made life much worse going to the point of saying I was drug seeking. I think that is what pushed me over the edge. I got so depressed that I withdrew from everything and everyone that meant the world to me. I stopped taking my meds. I had an allergic reaction to the flu vaccine and my body went into total shock. Within a day I ended up in ICU and at that point I thought my life wasn't worth it. So I went to a treatment center to get started on an anti-depressant to help and sort out my life. I had another cardiac episode and ended up in ICU again. My blood pressure just keeps bottoming out for the smallest of reasons. Well, I thought I had gotten better but yet I had another one in a million reaction to the anti-depressent and it sent me to the point I went nuts and wanted to kill myself. My anti-depressent did the exact opposite and sent my mind out of control to the point of needing restraints for awhile. (why does this always happen to me ) When the med was out of my system I finally came back to this Earth and went back to the treatment center for another week. While in there the doctors were able to witness how my episodes come on and they saw what I go through and realized that I was not abusing any of the pain meds. So we tried something new a duragesic patch. It adminsters small amounts of pain meds all of the time to keep my episodes from causing so much pain. I also now have oxygen at home to help with the pain. Because of my tiny arteries I get what the doctors called "heart spasms" the big heart wants more oxygen but my small arteries can't always supply it.

    It has worked wonderfully along with my new anti-depressant. I am again wanting to pursue the things in my life that I had given up on. I am also seeking counciling finally and I pray that it works. I am also applying with disability. I didn't realize it but I've been admitted to the hospital over 35 times in the past two years. That's not even counting the ER visits were I was discharged home. So hopefully I have a good case. I don't know how I am going to get all of my bills paid while I wait but for now I'm just going to take it one day at a time and hope.

    Well, I guess that is long enough. Thanks to all who have been so kind to me and have been like family.

    Mary S.

  • #2
    Re: The Long and Short of it all

    Mary,

    I'm so sorry that you've had such a terrible time of it lately. As far as depression issues go... anybody going through what you have gone through recently would begin to feel the same sense of hopelessness that you described. I myself have been there, and my past problems now seem trivial when i think of what you have had to endure. I'm glad that you are getting some help with these issues, and are feeling hopeful once again about the future. Please continue to keep us posted on your progress.

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

    Comment


    • #3
      Re: The Long and Short of it all

      Mary, you know we all love you, Linda

      Comment


      • #4
        Re: The Long and Short of it all

        Dear Mary,

        I am so glad you feel able to join us and write again! I will pray that you will soon be able to look back on this time and know that it is past.

        Please keep us up-to-date!

        Rhoda

        Comment


        • #5
          Re: The Long and Short of it all

          Dear Mary,

          Glad to hear that you are seeing a little "sunshine". Sometimes you have to look hard to see it. I'm so sorry that you have had such a rough time of it.

          Please know that I have been pulling for you, and will keep you in my prayers.

          Debbie

          Comment


          • #6
            Re: The Long and Short of it all

            I'm so glad you're back on the right track. I hope the everything keeps looking up for you.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: The Long and Short of it all

              Mary, I am glad to see that you are back with us. I have missed your letters. Keep thinking good thoughts and remember that you are loved and missed a lot when you don't write.

              Happy Thanksgiving and don't eat to much turkey.
              Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

              Comment


              • #8
                Re: The Long and Short of it all

                Mary.
                May you continue to find healing and hope. Going through all that you have been through it is amazing that you can still write at all. We have missed you and will continue to pray for you.

                Peace,

                Leon
                God Squad co-moderator
                Nothing is as gentle as strength and nothing is as strong as gentleness

                Comment


                • #9
                  Re: The Long and Short of it all

                  Mary,

                  I am sorry that you continue to have so many struggles and your health continues to impact your quality of life. May you get all the help you need and feel better very soon. You are in my thoughts and prayers.

                  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


                  • #10
                    Re: The Long and Short of it all

                    Hey kiddo,

                    I am happy to see you back on the board and happy to hear that you have taken some big steps to help yourself feel better. Just in case you forgot - we all do care a great deal about you and we are all here for you!

                    I hope you are taking care of the WHOLE Mary and that you are able to see how important you are to so many others. We may be 'cyber' friends but we are a community and we all gain strength, support and a few laughs from each other on this strange road of chronic illness!

                    Lots of love and a big hug
                    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


                    • #11
                      Re: The Long and Short of it all

                      I just can't seem to get a break. I went to the office of the psychologist/psychiatrist and they told me that my out of pocket would be $55 a visit and they wanted to see me three times a week. The also wanted the money up front. Unfortuantly I don't have that kind of money so they refused to see me. I really don't know what to do anymore. I am tired of all of the stresses. Also, none of my doctors that I see on a regular basis want to prescribe me the duragesic patch and be responsible for it. So I guess at the end of the month I won't have them anymore. I am sick of doctors and I just want it all to go away. I haven't had my aicd checked in five months because I can't afford the office visit. What should I do. I've exhausted every resource down here and since I'm single I don't qualify for squat. My appointment for disability is Dec. 7 but its only my second time applying so I'm sure I'll get turned down again. Sorry for all of my venting but I just am lost.

                      Mary S.

                      Comment


                      • #12
                        Re: The Long and Short of it all

                        Mary,

                        Vent all you want, that's one reason we are here. I wish there was something I could do to help. Good luck and you are in my prayers...


                        Tigger1
                        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                        Comment


                        • #13
                          Re: The Long and Short of it all

                          Mary,
                          I realize the struggle is big but keep trying. Please contact NAMI (National Alliance for Mental Illness.) There are 1200 centers throughout the states. Their web site is :

                          http://www.nami.org

                          You should be able to reach your local chapter via this site. I know that I have dealt with them locally and they have been very helpfull, a great resource, and very supportive.

                          Good luck and I hope this is helpfull.

                          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


                          • #14
                            Re: The Long and Short of it all

                            Mary have you asked to see a social worker? there are likely many services in your community that you can access but you need the in roads to find them. You can contact your towns health department or the social workers at your hospital.

                            Keep the focus and you will make it to the other side of this 'tunnel' and see the sun shining through!

                            Lots of love,
                            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


                            • #15
                              Re: The Long and Short of it all

                              Mary,

                              It is my understanding that the state mental health system works on a sliding scale, and with no income right now, you should be paying little or nothing for their services. Hang in there. We're all here for you if you need us.

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

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X