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

  • #16
    Re: The Long and Short of it all

    Mary, I don't think I've ever heard of anyone I know who has gone thru as much bad luck as you have.
    I wish I could give you some really good advice.
    I can only wish you better luck than you've been having.
    You know you have a whole lot of people here praying for you, so lets hope things start to change real quick.
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.
    Glen

    Comment


    • #17
      Re: The Long and Short of it all

      Again,

      Mary, I have no answers, but am checking on you daily.

      There are a lot of people here who really care about what you're going through, and are praying for you lots.

      Maybe some of our caring can make you feel a little better?

      Debbie

      Comment


      • #18
        Re: The Long and Short of it all

        well, yet another long week. it just seems to be problem after problem. just before Thanksgiving I started to feel real fatigued. after three days of sleeping I started to get severe muscle cramps all over my body. It got to the point i could not walk. Electrolytes were off so had to work on that. They don't know what's going on but rcommended a research hospital to go to .

        Well, im tired. Wil talk more later.

        mary S.

        Comment


        • #19
          Re: The Long and Short of it all

          Hi Mary,

          Oh, I am so sorry to hear about your problems. This is so tough and so unfair.
          I do not have health insurance, so I know what it is like to be turned away and shoved aside, that has happened to me for years. I was even turned away at the Arizona Heart Institute. And yet no one will insure me.

          Maybe you could try a local Catholic Social Services Center. There are some in the Phoenix area that offer 6 free counseling sessions. Maybe there are some in Orlando.

          I wish you the best of luck applying for disability -- you deserve it very much.
          Please keep us posted on everything. I wish you the best. I am so sorry.
          I will keep you in my thoughts and prayers.

          Big Hugs --- Eileen
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.

          Comment


          • #20
            Re: The Long and Short of it all

            Dear Mary,

            From the Florida Department of Health:

            Public health units provide preventive and primary care to persons who are unable to obtain care due to lack of income or other barriers beyond their control. Care is provided to benefit individuals, improve the collective health of the public, and pr event and control the spread of disease.

            ADULT HEALTH CARE -- Counties make available a range of basic medical care services and treatments. Clinic services ensure access to essential health care and decrease unnecessary emergency room visits.

            Family Health Services
            4025 Esplanade Way
            Tallahassee, FL
            850-245-4100

            Please call and find out where there is a clinic you can go to. I believe they have mental health, too. Just because one place won't see you doesn't mean someone else won't. I know you get way more than your fair share of the runaround, but hang in there. You are on the right path.

            all my hugs and prayers,

            Sarah

            Comment


            • #21
              Re: The Long and Short of it all

              Well, yet another let down. I applied for the disability but won't know anything for at least 4-6 months. I don't know about any of you but surviving that long without working is impossible. I asked them if it was ok to return to school. They told me no if I was well enough to go to school I was well enough to work. The lady even told me that the less you do to make it on your own the better. I also applied for food stamps and was denied for expedited assistance so it is at least a month before I can get help with food. It is good to know that our government is there when we really need it!

              I give up on the state of Florida I am never going to get any assistance. Honestly, it feels like I'm begging and it is more stressful than anything I've ever done. I think I'd rather live with the angina then the constant banging of my head against the wall of this constant bull krap.

              I'm to the point that I just want to say @#@$ it and go my own way. I don't want to see another doctor. I don't want to be poked again and I reject having to go to another "research" hospital to be treated like a human guinea pig again. I'm fed up and I want to live my life as a 24 year old again. I want to go out with my friends have a good time not constantly have to wonder where my next meal will come from. I long for having an independant life again. I'm shouting on the inside but I can't get it out to be heard. I wish my friends around me would just listen to the part of me that is not strong for once. I wish they would realize my fears and frustrations. Not tell me your strong everything is fine. IT IS NOT FINE! My life stinks right now and they can't see it.

              Sorry for the rage of anger but I just could not hold it inside anymore.

              Mary S.

              Comment


              • #22
                Re: The Long and Short of it all

                Mary,

                I'm so sorry to hear all this crap they're putting you through. I fully understand what you are going through with assistance. In a day and age when you think just about anybody can get public assistance if they need it... for single folks it is next to impossible.

                I was in CHF last spring... couldn't work, had to drop out of school, my doctor signed off on the disability until i could get surgery... and yet i was turned down for virtually everything. No cash assistance (although in PA it is only 189 dollars a month anyway, no disability (since it wasn't expected to last 12 months or more), and no rent assistance (but they were nice enough to tell me where the homeless shelter is).

                Meanwhile... my neighbors, who are perfectly fit and able to work, get every assistance program available to them because they keep popping out kids.

                I survived by means of my student loans, friends, family, and an extremely sympathetic landlord who let me live here all summer without paying a dime of rent. I've since caught up on that after i got my new student loans this fall, and my landlord refused to accept any late fees for the back rent. I was very fortunate.

                The bottom line is... unless you have children... there a few programs in place for single folks, and they really don't care if you end up in a homeless shelter. I don't quite understand the disability thing either. Even if your application get's accepted, they tell you it will be at least 4 to 6 months (but more like a year) until you see a check. And that's only if it sails right through! What ARE people supposed to do in the meantime without any other assistance programs to help?

                I wish i could help you, but all i can offer right now is a friendly voice and a sympathetic ear. Please try to stay as positive as you can, even though things look so bleak right now.

                Please take care,

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

                Comment


                • #23
                  Re: The Long and Short of it all

                  Dear Mary,

                  My heart aches for you right now. I know the feeling that comes when everyone thinks you are the strong one and can take anything, but you feel that what you want is to just depend on someone else for awhile. A very few years ago I went through a time like that. Events in my life made me acutely aware of childhood abuse, I was working in a job that caused great stress, I was severely anemic and did not yet know that I had HCM so felt terrible, and those were just the beginning of the stresses. But, I had always been the optimist, the strong one, the one that everyone dumped their problems on. I wanted to dump mine on them, but they would listen for a few minutes and then just end up telling me theirs.

                  You have even more stresses than I did, so I can imagine the disappointment and frustration you feel. For me, I found that I could only lean on God. He did not dump back on me. May I make a concrete suggestion: Call a church and tell them something of your situation and ask for help with food, rent, utilities, whatever. If they do not help, call another one. I firmly believe that it is the responsibility of people who have been helped by God to help others. Unfortunately, some churches get burned out helping people who turned out to not need help. But many persist because they know it is right. So, please swallow your pride and ask!!! I will pray that you will call the right one the first time. Please let me know how it goes.

                  Rhoda

                  Comment


                  • #24
                    Re: The Long and Short of it all

                    Mary.

                    I want you to know that while we have never really met, I do pray for you and others on this board daily. I cannot imagine the frustration you describe! I am so sorry you have to go through all this.

                    I agree with Rhoda on contacting churches. As a minister, we get bombarded with people all the time who need help. There are the regulars and then there are those who are demanding and unthankful etc. After a while it gets easier to tune people out. In order to not do that we began to work closely with the local “Council of Churches.” These folks helped us know who was really struggling and needed assistance and who was simply using the system. Perhaps there is a similar organization in your area. Once you get someone to know you and realize that you are not trying to shirk responsibility, but really are in dire straits, they will advocate on your behalf better than you can.

                    Keep us posted and do not be afraid to rant whenever you feel the need.

                    Peace.

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

                    Comment


                    • #25
                      Re: The Long and Short of it all

                      I’m very sorry to hear of your troubles. Doctors can sometimes be very brash and difficult to work with. In my experience, I’ve found that the best doctors are always the most understanding and kind. After all you’ve been through, I can most certainly understand not wanting to see another doctor and be poked.

                      In regards to therapy, I wonder if there is some type of free local support group. I know in my area we have free support groups for cardiac patients. The support you find in other patients is amazing.

                      I think it’s horrible they wanted to charge you cash up front for an office visit… Shame on them! I hope I can hang in there long enough to attend medical school and help people free of charge if needed…

                      I will be praying for you… I wish you the very best

                      Nigel
                      I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

                      Comment


                      • #26
                        Re: The Long and Short of it all

                        Hey Mary,
                        Haven’t ‘spoken’ to you in a few days now. IM me when you can, and if you leave your PC on, I’ll try to reach you.

                        Good luck on Monday – I hope that at least works out your way. Let me know what happens.

                        Luv U - Grandpa

                        Comment

                        Today's Birthdays

                        Collapse

                        Working...
                        X