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Need some help


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05
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  • Need some help

    I need some advice!

    My doctor has made me take another month off from work. She thinks that my job has become way to hard on my heart and I should reconsider finding another job. I don't know what to do. My savings are completely depleted and I don't have any family to back me up.

    Does anyone know of any organizations I can call to get temporary help with my bills? Also, is there any way to smoothly transition jobs because of a disability? There is no way I can afford Cobra for ninety days.

    My doctor suggested I apply for disability but as I was looking up the requirements it said I had to be disabled for a year. She is only forcasting a couple of months until I am back on my feet.

    I tried the employee assisstance program at my work and all I got was a story on how the woman survived on Ramen for a year. I can see me doing this with CHF and all right? She also sent me to a psychologist that said I had mild depression and they want to start me on anti-depressants; oh joy.

    I really need some help and don't know where to start any advice right now would be a Godsend!


    mary s.

  • #2

    I wish I knew something "useful" to tell you. But I don't. You've had a whole series of tough challenges, any one of which is pretty overwhelming. If I were you I'd be in great need of a sophisticated, supportive person who had the time and inclination to help me put it all in perspective and figure out my priorities and options. A family member, a friend, a counselor, Lisa . . . .

    I'll keep you in my thoughts, Mary, and hope someone else here can give you something more concrete.



    • #3
      Mary, do you have short term disability where you work? If not, how about state disability? Most states have a state disability that pays you 2/3rds of your salary if you are disabled. I would look into this. Take a leave of absence from your job. There is the family leave act you can use if nothing else. Maybe after a couple of weeks you could look for a less stressful job while you are out on leave. I think by law that companies have to provide either state disability or a private short term disability plan. If you don't have many assets you might also apply for SSI. I am not sure if they have the same requirement of being disabled for a year or not before granting benefits. I would try for the state disability first. Good luck! I will keep you in my prayers.


      • #4
        Some places you might give a call. Even if they can't help you, they might know of another organization that can.

        DFC (Divison of Family & Children)
        Ministerial Allicances (Churches)
        Food Banks

        In Indiana we have an organization called Hoosier Uplands that helps people out with their heating bills. Also our local utility offers a program to help those who can't pay their bills. In the county where I work, the churches help out a lot of people who are stuck in situations like yours. Even if the above can't assist you, they might know of some additional sources.

        Good Luck and Hang in there.
        Amy N.


        • #5

          I'm sorry you're having a tough time. I just went through all of this several months ago... no job, no health insurance, no money... and it can be very scary i know. But it'll all work out, trust me. Here's a few resources that may be helpful to you. Bear in mind that any comments i make are based solely on what i learned as i went through this and i am not a human resources specialist like Lisa. She can help you a lot more than i can. However i did look up some contacts for you:

          Americans with Disabilities Act
          ADA Hotline: 800-514-0301

          You may wish to contact the human resources department at your place of employment and ask them specifically to explain your rights under the ADA. Lisa was very helpful to me in this regard, and can prep you for this call as she did me. Explain to your employer that HCM does fall within the framework of the ADA and see if there are any reasonable accomodations that can be made to enable you to keep your job. Above all, be nice. If they know what they are doing, they will want to help you keep your job.

          Call the ADA hotline regardless. They keep a state by state listing of agencies that may be of help to you. The lady i spoke to on the phone spent at least 30 minutes with me and gave me the phone numbers of no less than a dozen local agencies in Pennsylvania that could help me in a broad range of areas including health issues, disability, and vocational rehab. These are great folks and they want to help you. I highly recommend that everyone with HCM call just for all the great info they provide. The website has great detailed info as well, particularly in the area of ADA law and what our rights are.

          Unemployment: Florida Agency for Workforce Innovation
          Orlando Area Unemployment Call Center: (407) 897-2880

          If you have already quit your job, file for unemployment immediately regardless of whether you think you qualify or not. It looks like you can even file your claim online in florida and there's a link on their website for that. You will need a letter from your doctor stating that he instructed you to quit due to health reasons. It's not enough for him simply to say you were diagnosed with HCM, the letter must say that he specifically told you to quit your job. If you don't have the letter yet, file anyway then go get the letter. There's usually a waiting week for benefits and you don't want to add extra weeks to that by waiting to file.

          If you have not yet quit your job, explore the possibility of getting disability either through your employer or from the state of florida. The feds will not pay disability unless you are totally and permanently disabled and cannot work at all. That usually doesn't apply to us HCM'ers. Make sure you understand exactly what your doctor means for you to do. If he just wants you to take some time off, that's considered a medical leave of absence and you may not qualify for unemployment, even if the leave of absence is unpaid. Find out if your company pays you anything while you are on leave. Your best option may really be to work out an accomodation with your employer allowing you to keep your job but with a reduced workload.

          In my case, my HCM makes it impossible for me to ever do the job i once held, so a leave of absence was out of the question and i was determined eligible for unemployment.

          Florida Dept of Health and Human Services

          The website allows you to take an online questionnaire and determines your eligibility for various programs such as cash assistance, foodstamps, and medical assistance. Don't be embarrassed to utilize any programs you can get your hands on. I applied for everything. Be sure to tell them that you are in need of life-sustaining medications for your HCM. If you need them, they can help you get them.

          Florida Public Health Services by County

          You can find the address and phone number of your local county health department here. Be sure to ask them also if there are any privately funded clinics or programs available as well. Although they are not directly affiliated, they will at least know of their existence and help you get in contact with them.

          Florida Agency for Health Care Administration
          Hotline: 888-419-3456

          Provides information on medicaid and reduced cost health services for low income florida residents without health insurance.

          Florida Office of Vocational Rehabilitation

          If you do lose your job because of your HCM, you may qualify for assistance in retraining for a new job, money for education, and a host of other services that may be helpful to you, as well as some medical services while they help you re-enter the workforce. My local OVR office has been extremely helpful to me.

          I hope this info may be of some help to you. I saw your post and had some free time tonight so i thought i'd do some research for you. Even if any of the contacts above can't help you, be sure to ask them who can help you, and the phone numbers of the appropriate agencies.

          Try to keep as many options open as you can. Once you shut some of these doors they may be hard to get back open, especially concerning your job. If you decide to quit, make sure you get the letter from your doctor first, before doing anything. Your employer should be informed of your disability and given a chance to make reasonable accomodation for you, prior to your decision to quit your job.

          Also keep in mind that many of these laws vary from state to state. My employer was NOT required to carry any disability insurance on me at all, so be sure to check with your employer regarding this.

          Take care, and keep your chin up. We won't let you starve or go without the care you need

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


          • #6
            WOW! You guys are awesome I would have no clue about half of this stuff looks like I got a lot of research right to do! Thanks a million Jim!

            And Sarah I am still perculating over our discussion last night! I didn't know the grass was greener over the state line.

            As always you guys rock!

            Mary S.


            • #7
              Mary, this is all great info, and a big chore ahead for you to sort it all out. Best wishes and a great big Thanks to Jim, Amy, Kathy, and all others who have shared. Linda


              • #8
                Hey Kiddo!
                I have been a bit sick myself and am finally feeling a bit better! So Jim really stepped up to the plate here..BRAVO JIM!...
                My 1st action would be a nice chat with the HR dept re ADA... I KNOW your employer MUST have some light duty work where you can get off your feet...the place is a small city!!!

                I will be in the office Tuesday...call me (I will call you right back so it is not costing you to chat)

                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)


                • #9
                  Lisa I tried that avenue with Disney and was told since it was a personal illness they did not "have to give me light duty options" if my dr. were to give me permanent restrictions they would make an "effort" but could not guarantee me a position and I could possibly lose my job in the process. They won't even look until I have the permanent restrictions in place.

                  Even if I do go back my FMLA has been exhausted and I won't be able to be late even if I am at a Dr. office. If I'm late I'll get punished for it!

                  I did make several calls today and got absolutly no where. I even drove forty five miles to be told they closed twenty minutes ago. I wish they would have told me that on the phone. Now I don't have gas to go back! My funds are completly exhausted as well as myself. It almost seems like trying to get help is more stressful than going to work!

                  Lisa, I am going to give you a call tomorrow! Sarah has been a blessing these past few weeks and I so want to thank her for it. I don't know how I would have gotten through all of this without her. Big hug and Thanks!

                  Mary S.


                  • #10

                    Dear Mary,

                    How rotten is that? I don't think your employer's position is legal --or at least it shouldn't be! I'm so sorry you had such a horrible day.

                    I am crashing now, but call me tomorrow if you want to vent.

                    I think you need documentation from your doctor that HCM is not a "personal illness" but a genetic condition ---it isn't like you got the flue or pneumonia--and try again with the job people.

                    Sounds like you need to find a pro bono employment lawyer or call the state and ask them who you talk to about this kind of thing. Lisa would know whose cage to rattle. Those people really are rats.

                    hang in there!!!


                    ps you're welcome. least I can do.


                    • #11
                      Dear Mary, I wish I could help you in some way other then praying for you and trying to keep your spirits up. Have you tryed state aid like medicaide? I don't know how it works in your state, but I know some people in my state that work and some that don't, that get help.

                      Hang in and keep your chin up.
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.


                      • #12
                        Mary, you were in my prayers all weekend. You kept coming to my mind. I know that I can't do much for you from clear over here on the west coast but if I could grow wings and fly I'd fly over to help. Being sick and recovering like you are, all the extra stress of calling this place and that place is very very hard. Only those who have been there have a clue. I'm so glad you can come here and get all the wonderful support. From someone who's been there and who has been an advict for others like you, I will pray you find a volunteer social advict who is versed in all the different programs in your area and who can do some of the work for you to help you. Did that make sense. Hey it's late!

                        May the Angels pick you up and softly deliver you to a place of peace and comfort.



                        • #13
                          Re: Need some help

                          Mary and I spoke earlier.. she has got several plans in action to help get things back on the right path...
                          With time and a possitive attitude things will work out just fine... and Mary will be filled with usefull tips for all of us!
                          Take care Mary... Stay tuff!
                          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)


                          • #14
                            Re: Need some help

                            Yet another wonderul day! I spent the night in the hospital again. I was getting out of my boss's truck when I got extremly light headed and had severe chest pain. I fell back into his truck apparently and was out until he got me to the hospital which was about five minutes away. I don't remember any of it.

                            The docs watched me over night and doubled the isordil and didn't seemed worried about it. I am worried though. I don't know what is causing all of this and they don't know either.

                            How often are HCMers supposed to have echos done? I haven't had one in about six months and wondering if there are changes. I was not obstructed before. Can there be changes in that amount of time? I'm just confused and looking for some sort of answers before I go completly nuts.

                            Thanks for the support!

                            Mary S.


                            • #15
                              Re: Need some help

                              Dear Mary,

                              It would be unusual but not impossible for there to be changes in your echo.

                              I'm so sorry you were in the hospital again. Maybe you've just been pushing yourself too hard--it is really important to recuperate from being in the hospital. I know that sounds weird, but it is very hard on the body to be without quality sleep and being under the stress of being in the hospital.

                              gimme a call if you want to chat. Oh, and I got laid off on Wednesday, so I'm around --a lot!!!



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