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The Long and Short of it all

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Burton Borrok
    replied
    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

    Leave a comment:


  • Nigel
    replied
    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

    Leave a comment:


  • Largehearted
    replied
    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

    Leave a comment:


  • Laoshur
    replied
    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

    Leave a comment:


  • mtlieb
    replied
    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

    Leave a comment:


  • Toogoofy317
    replied
    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.

    Leave a comment:


  • Sarah
    replied
    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

    Leave a comment:


  • Eileen2345
    replied
    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

    Leave a comment:


  • Toogoofy317
    replied
    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.

    Leave a comment:


  • Debbie
    replied
    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

    Leave a comment:


  • Glen Beamish
    replied
    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.

    Leave a comment:


  • mtlieb
    replied
    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

    Leave a comment:


  • Lisa Salberg
    replied
    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

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • Tigger1
    replied
    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

    Leave a comment:

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