Sometimes I wonder when the Merry-Go-Round is going to stop!

camul
camul Member Posts: 2,537
in Breast Cancer #1

Mid August got a letter from SSDI that I was being re-evaluated for continuation of benefits, and they didnt get paperwork from the blood monitoring team (blood clots). They got it from the cancer center, but not from the Univ of Utah Hospital. Phone call followed that this could stop the payments if it is not received, this was around the 15th of Aug. 2 weeks ago I vot a letter saying they would reevaluate 8/17 There was a box ckd that said I would need to do a 9 month trial work period, and another box ckd staing that the doc who determined disability said condition waz improved. Followed by about 8 pages on getting retrained, how to do the 9month trial period, and pages regarding the appeal process. This was Friday eve when I read it. I panicked. Called Gagee, who laughed. The first paragraph said it was continuing , the 8/17 date was referring to 8 of 2017. There was an IF that I missed. GAGEE was laughing bcuz she went thru the same thing a few years ago. I was so wigged when I called her and thankfully, I didnt have to go the whole weekend. When I talked to Medicare, asked why it was so confusing? I asked if I would have looked for a job and worked, thinking I was following their directions, would that have messed up my SSDI? She said yes if I wouldnt have reported it! It could have resulted in me losing my SSDI. Moving on... Lastyear, I had a mix up w/company benefits and Medi are part B. Co. Said I didnt need part B as they weremy primary ins. This would be the case normally, but I worked for the phone company, and my long term medical was a contracted Cobra plan. The company was in the process of being taken over by CenturyLi k which wasin southern states and was not union. The rep that was asaigned to my longtem disability benefits was not aware, I had never been on long-term disability so I didnt know, and the medicare reps gave me a different answer with each phone call. Fi ally got that all taken care of. I needed Medicare pary A&B, my company would continue my medical (as a supplement), life ins., and a disability ck. I would continue paying the premiums on the medical and life ins until 2022, or my 65th birthday. It is in writing. On Tuesday of this week, I received a letter from my benifits that my lice ins ends October 3@, 2015. I called our benefits dept. was told that is correct, the letter from last year was an error. The new rep had made a mistake. They gave me the number and caze number for met life. I was able to sit down with the rep Wednezday, took my son with me. I waz told by my old employer that it would be the zame pri e. By law theyare requireed to let me keep the policy even with pre-existing which is gfeat. Because I am si k, have been diagnosed and freted for a hroni or ferminal illness in ghe last 5 yeats, it is not the same price. The premiums jumped fdom 115. A month to $435.

Comments

  • camul
    camul Member Posts: 2,537
    #2
    cont.
    I have been paying this for 15 years and will continue with help from my kids. The met life rep waz really nice. His first portability and even he was surprised at the dif in price because of my health. Really frustrating thT they can chargw thT when it is not a new policy, just goimg to self pay! This is the only way I can even have life ins.

    That afternoon I had my appt with pain dr. I like her. She listens. Now she suggested Ritalin during day, sleeping pills at night. See the rad onco on 27th. I refused MRI and scans until I see rad onco.She may not need all thay this one wants (has been the case each time). Am still hesitant on more rads but hands and feet are worse, get so frustrated bcuz I am too exhausted most of fhe time to do things I have planned. Blood pressure still too low. Her concern is still tumor activity is compressing spinal column. I see med onco on 22nd and rad onco on 27th, hope they work together.

    When I suggested she ck my thyroid, she reminded me that these symptoms could be the late stage cancer. My thinkimg is they are.allso hypothyroid symptoms and it is really easy to tweek a dose of synthroid! I know this may be as good as it will get. I woke Thurs am.with a sore throat, earach, sinus and headache
    Have slept.most of the last few weeks. Get ready to go somewhere, sit down and fall asleep. Then I get upset with myaelf. And I have been so weepy! So not me. Then I have to laugh bcuz I dont even lnow why I am crying. Dr. asked me if I think I might be depressed. I had to laugh! My response was "do ypu think so?". But 5 minutes after crying, I can see something that totally cracks me up!
    Good nivht everyone, have a healthy happy week!
  • camul
    camul Member Posts: 2,537
    #3
    date

    That was Oct 31, 2014, in 2 weeks. That was a long term or chronic illness. My c and z are messed up. I really can spell.

    Just wish I knew where I am. Suppose to be more stable, yet pain is increasin ad gettin more tired all the time..
    Needed to vent. Dont know what else to do? Trying to find a hobby or something I really enjoy that is doable.
  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #4
    camul said:

    date

    That was Oct 31, 2014, in 2 weeks. That was a long term or chronic illness. My c and z are messed up. I really can spell.

    Just wish I knew where I am. Suppose to be more stable, yet pain is increasin ad gettin more tired all the time..
    Needed to vent. Dont know what else to do? Trying to find a hobby or something I really enjoy that is doable.
    EVERYONE HAS UPS AND DOWNS

    Camul, I just read your profile. Girl, you have really been through it for many years. Now I know how you feel like you do for fighting this for so long. I have only been fighting it since Jan.2013 and I am almost insane  with all the ups and downs that I have had. You are exactly right when you said we are all in this together but some are worse than others. And the insurance companies can drive you insane so much that you could probably get disability from it. My husband had to pay out $545.00 dollars the other day for a special blood thinner that he could only go on. This was only for 30 days. He has to stay on it for 6 months or longer for a blood clot in his leg. To make a long story short insurance will not pay for it, nor my gabapentin for neuropathy or my arimidex that I have to take for five years and they are expensive also. Thats not including a 16,000.000 dollar bill that they said they were not paying after I had a masectomy and surgeon had to go back and do surgery for repairs that needed to be done. Everyone has ups and downs. More has them more than othersand worse. Life seems it is not fair. The rich keeps getting richer and the poor keeps getting poorer. I know its hard saying this, but hold your head up and start fighting this wicked ssa like you have for many years. Hope your throat trouble turns out to be nothing, but if not there are plenty of meds out there now that can fight this since you have had cancer in 2002. Let us know how u r doing.  (HUGS AND PRAYERS)   Pixie

  • camul
    camul Member Posts: 2,537
    #5
    Pixie Dust said:

    EVERYONE HAS UPS AND DOWNS

    Camul, I just read your profile. Girl, you have really been through it for many years. Now I know how you feel like you do for fighting this for so long. I have only been fighting it since Jan.2013 and I am almost insane  with all the ups and downs that I have had. You are exactly right when you said we are all in this together but some are worse than others. And the insurance companies can drive you insane so much that you could probably get disability from it. My husband had to pay out $545.00 dollars the other day for a special blood thinner that he could only go on. This was only for 30 days. He has to stay on it for 6 months or longer for a blood clot in his leg. To make a long story short insurance will not pay for it, nor my gabapentin for neuropathy or my arimidex that I have to take for five years and they are expensive also. Thats not including a 16,000.000 dollar bill that they said they were not paying after I had a masectomy and surgeon had to go back and do surgery for repairs that needed to be done. Everyone has ups and downs. More has them more than othersand worse. Life seems it is not fair. The rich keeps getting richer and the poor keeps getting poorer. I know its hard saying this, but hold your head up and start fighting this wicked ssa like you have for many years. Hope your throat trouble turns out to be nothing, but if not there are plenty of meds out there now that can fight this since you have had cancer in 2002. Let us know how u r doing.  (HUGS AND PRAYERS)   Pixie

    so amazing Pixie
    Thwe way ins works. I am on SSDI. I make too much to qualify for anything, but not enough to live on. You are right. I had to change med for blood clots also as insurance was no longer covering the first one so I am now on Warfarin. Same with some of the chemos. My brother would have to pay 132k for one year on a chemo for CLL and Small Cell Lymphoma. If he gets ina a study it drops it to 900. a month. That is his only option left so hopefully his numbers will get in the range to qualify.
    Cancer is rough, regardless of the type, but dealing with insurance on top of it makes it even harder.
  • TechMama
    TechMama Member Posts: 28
    #6
    camul said:

    so amazing Pixie
    Thwe way ins works. I am on SSDI. I make too much to qualify for anything, but not enough to live on. You are right. I had to change med for blood clots also as insurance was no longer covering the first one so I am now on Warfarin. Same with some of the chemos. My brother would have to pay 132k for one year on a chemo for CLL and Small Cell Lymphoma. If he gets ina a study it drops it to 900. a month. That is his only option left so hopefully his numbers will get in the range to qualify.
    Cancer is rough, regardless of the type, but dealing with insurance on top of it makes it even harder.

    So sorry for what you are

    So sorry for what you are going through.  Financial stress on top of cancer sucks.  Good luck with your treatment!

     

  • New Flower
    New Flower Member Posts: 4,294
    #7
    Carol I am with you

    I am very sorry that you have to deal with insurance and SSDI issues. Lack of compassion hurts more that disease itself.

    Keep fighting burocrats and paperpushers.

    Hugs 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
    New Flower said:

    Carol I am with you

    I am very sorry that you have to deal with insurance and SSDI issues. Lack of compassion hurts more that disease itself.

    Keep fighting burocrats and paperpushers.

    Hugs 

    Insurance!!!

    You need it and yet they make you crazy with all the ways they try to avoid paying anything.  So far, I haven't had any problems with mine (that I know of).  I hear stories like yours and wonder what on earth people are supposed to do.  There's the public perception that all is well.  Well, it is - as long as you're young and healthy and only need a flu shot. 

    You need a hobby?  When I finished treatments I learned how to knit.  I could never knit in all of my attempts over the years.  Well, I did and now I'm hooked.  I find knitting very therapeutic.  They say the rhythm of the needles is like music to the sole.  And for me it is, it's rather meditative.  I always have a simple project on some needles to take with me when I have a doctor appointment because it makes the wait go by more quickly.  So, Carol,, that's my 2 cents about a hobby.  A simple knitting project that you can pick up and take your mind away.  Plus it feels good to me to create something.  I assume crochet would also have the same effect.  And somewhere today I read that knitting helps prevent Alzheimers. . .  just sayin' . . .

    Suzanne

  • GlowMore
    GlowMore Member Posts: 789 Member
    #9
    camul said:

    so amazing Pixie
    Thwe way ins works. I am on SSDI. I make too much to qualify for anything, but not enough to live on. You are right. I had to change med for blood clots also as insurance was no longer covering the first one so I am now on Warfarin. Same with some of the chemos. My brother would have to pay 132k for one year on a chemo for CLL and Small Cell Lymphoma. If he gets ina a study it drops it to 900. a month. That is his only option left so hopefully his numbers will get in the range to qualify.
    Cancer is rough, regardless of the type, but dealing with insurance on top of it makes it even harder.

    HEY CAMUL***

     

    YOU ... YOUNG LADY ...  NEED A BIG GLASS OF THIS NICE PINK WINE  *****  and since it is now the Week End, it is probably time to go to the Window of the Pink Waiting Room.... open it .....stick your out the Window and SHOUT:

                  "I'M AS MAD AS HELL AND I'M NOT GOING TO TAKE THIS ANY MORE  !!!  

     

    (there now....doesn't that feel better?)       Sending Love, hugs and prayers....hang in there girl....

             

  • camul
    camul Member Posts: 2,537
    #10
    Double Whammy said:

    Insurance!!!

    You need it and yet they make you crazy with all the ways they try to avoid paying anything.  So far, I haven't had any problems with mine (that I know of).  I hear stories like yours and wonder what on earth people are supposed to do.  There's the public perception that all is well.  Well, it is - as long as you're young and healthy and only need a flu shot. 

    You need a hobby?  When I finished treatments I learned how to knit.  I could never knit in all of my attempts over the years.  Well, I did and now I'm hooked.  I find knitting very therapeutic.  They say the rhythm of the needles is like music to the sole.  And for me it is, it's rather meditative.  I always have a simple project on some needles to take with me when I have a doctor appointment because it makes the wait go by more quickly.  So, Carol,, that's my 2 cents about a hobby.  A simple knitting project that you can pick up and take your mind away.  Plus it feels good to me to create something.  I assume crochet would also have the same effect.  And somewhere today I read that knitting helps prevent Alzheimers. . .  just sayin' . . .

    Suzanne

    I used to crochet.
    I tried to make a scarf and worked on it forever. I am not even halfway through. My hands go numb and I look down and have dropped the hook! I have a quilt half quilted, drop the needle and can only sit for a short time.
    I will figure out something, just cant be too intricate.
    Two more days and the scans are done, so hopefully they can tell me something.
    Hugs,
    Carol
  • GlowMore
    GlowMore Member Posts: 789 Member
    #11
    camul said:

    I used to crochet.
    I tried to make a scarf and worked on it forever. I am not even halfway through. My hands go numb and I look down and have dropped the hook! I have a quilt half quilted, drop the needle and can only sit for a short time.
    I will figure out something, just cant be too intricate.
    Two more days and the scans are done, so hopefully they can tell me something.
    Hugs,
    Carol

    Holding you in my Heart

    Holding good thoughts for your scan tomorrow Carol........and in my heart for the strength that you exhibit  ***

    Sending big hug and a big prayer................

  • camul
    camul Member Posts: 2,537
    #12
    GlowMore said:

    Holding you in my Heart

    Holding good thoughts for your scan tomorrow Carol........and in my heart for the strength that you exhibit  ***

    Sending big hug and a big prayer................

    Thanks

    Glow More. I hope so too. The trsts are a breeze, its the waiting that is so hard. Carol Will let everyone know whatever they decide.

Discussion Boards