What I’m Working On….

I’d love to say I’ve been stitching but that’s not true.  I’d love to say I’ve been sewing but that’s not true either.

The last week that I’ve taken Kramer to radiation and doctor appointments, I kind of gave up on stitching.  I started doing the puzzles they have out instead.

I’ve needed something that is COMPLETELY brain rot.  In the picture Carver “helped” me…or rather I helped him get some hand sanitizer.

With all of the changes that have happened in the last few weeks, I spent last week catching up and getting the house back in order after being gone at the hospital the whole week before.  The girls have been great managing childcare but there are some things only I can do…mail, organizing, and the list goes on.  Even getting groceries took a little doing as I didn’t even know what we had in the house!!

Our neighbor has been AWESOME.  He’s mowed our lawn the last two weeks in a row.  THANKS MIKE!!  So the lawn is one thing I’ve been able to not worry about.

This week is the week we get the disability paperwork underway.  I’ve always been terrible at organizing the birth certificates and all of that so this isn’t going to be quick either.  Kalissa has been a great help with all of this.  Then after that, we have to get some new insurance in place.  We know that Kramer won’t be going back to work so we need to get off his boss’ insurance and onto something else.  I don’t have an insurance option so now we will be wading through and figuring out Obama care.  We will be needing to go to the doctor often so we need the best plan….that means another $4000 deductible.  We’re hoping the drug coverage is okay…we might need to buy a supplement insurance as well.  UGH.

I know this will surprise some of you as it did me.  Kramer will likely get disability.  BUT that does not provide any insurance.  He has to wait two years before there is a chance for him to get medicare.  AH!!  He OBVIOUSLY has a disability.  It’s OBVIOUS he won’t be able to go back to work.  He can’t drive so how can he even get to work…plus when cancer goes to the bones, the pain is so high that the medicines a person is on doesn’t allow them to operate any type of machinery.

BUT..I think we have to wait until he is approved for disability before he can apply for Obama Care as don’t know what or if he’ll have any income from disability.  It’s a challenge that’s for sure.  If anyone knows anything that will help us out with all of this, please pass along any information to me at rogjok@iowatelecom.net.

We are again in one of those spots where we are learning WAY more about things that we never dreamed we’d be learning more about.

You can imagine how much time all of this applying and learning the ins and outs of things take…how much phone time and how much plain out frustration.

Getting meds is still an issue.  I talked to the doctor about that and they increased the amounts with the subscriptions to try to help us out.  But this past week we had to get medicine on Thursday…new meds, 6 of them on Friday, another med on Saturday and another on Sunday.  Thankfully the Sunday med we didn’t NEED immediately so Kalissa will pick that one up when she’s in town to work on Monday.  For those of you who don’t know, we live a half hour from the pharmacy.  Luckily it’s on the way to Lacrosse so some of the days we’ve been able to stop along the way and get them….but that really tires Kramer out.

We’ve had LOTS of visitors and we LOVE that.  Both of us do.  People ask us “what can we do to help?”.  Besides cards, actual in person visitors, have been a real blessing.  Kramer gets so bored here with me and the television for company.  People say that I should do something different about Kramer being around the childcare kids but he loves them and it sure breaks up his day.

So…that’s what I’m up to.  I’m hoping that a couple evenings this week I’ll get a chance to touch a needle again.  I’m starting to at least feel a little caught up on the home front so taking an evening off will be possible.

28 thoughts on “What I’m Working On….”

  1. Hi from Canada
    One thing I would suggest is to keep EVERY receipt that you get when you purchase some thing no matter what it is. I know that it will be a pain in the butt but it may be helpful when you are applying for different insurance coverage.

  2. Jo, I wish I could help you on the insurance since I’m kinda in the same position as Roger, (breast cancer metastasized to the bone) but I’m lucky. I retired before I was hit with cancer and I have really good insurance through Kaiser. Good luck.

    I second Betty’s suggestion to keep all receipts. Things add up and the insurance doesn’t always track everything as quickly as you can. My experience is once you hit maximum amounts if you pay you most likely will NOT get reimbursed for your over payment.

    Hugs, loves and lots of prayers coming your way.

  3. I am so thankful I live in Aust. We have the option of the public health system. A person in Kramer’s position gets the treatment needed at no cost, except for paying for meds. The biggest cost paid for meds is $37 per script filled. Its not perfect, you dont choose your Dr and sometimes you have to wait but it’s not bad either.

  4. If you lose or quit your job for any reason you qualify for a special enrollment period under obamacare. I also know that depending on your income you can get some credits that will help reduce your costs. You can go on the website and see what insurance plans are available in your area and compare plans. I don’t know what your state has but we have Medicaid here that is available and you may qualify for that since your husband is no longer able to work.

  5. Denise Briese

    You never realize what people go through when they are sick.. not just the stress of being sick but all the paperwork. Hoping you get some relief soon with that situation.. I had a similar nightmare with a child and getting proper help.. no one could help me. You would think with all entrepreneurs out there someone would start a business for just such situations.. let me fight your paperwork and insurance battles someone that knows the ins and outs of it all

  6. I agree with Judy says. Most states have a state health care plan. I suggest you check and see what Iowa has. I hope you guys can get into a routine since you’re home more. Blessings!

  7. Paulette Voit

    Morning Jo, I would talk to your doctor and work with his office pesonal and get an appointment to get the disability paperwork moving along. For someone with cancer they process things quicker and once this is in place it will help you immensely. Kramer should be able to get some sort of a check because he is unable to work but this also should help you with insurance. I know I had to go through this with my husband, it was a while ago and I don’t remember all the facts but I know that was one route that we took that did help. God bless you all and many prayers.

  8. I remember filing for disability for my hubby years ago. It did take a while, and then even after he was approved another 5-6 months before the first check arrived. My best advise is to get copies of as many medical records as you can to include with the application. A possible place to check for help is if you have an Aging and Disability Recourse Center (ADRC) like we have in Wisconsin, To help with some of the insurance and suppliments. Hugs to you as you go through this journey. It is not an easy one.

  9. Was your husband a veteran by any chance? the VA does have help for this sort of thing. I am so sorry that your family is going through this. My DIL worked for a company that did medicaid. There used to be a woman here that specialized in helping people with their insurances and filings. Once she had the hospital and they knew she was working it, they left us alone when my husband had cancer. Sadly she retired. you are fortunate to have such a loving family to help. Hugs.

  10. I keep important papers , birth certs, SS cards, custody papers, etc in a binder a section for each of us – self, ex & five children. There is a separate binder for child with disabilities. It really helps to be a bit organized. Really helped when adult child with disabilities let her ins lapse and lost her SS card. I just took her binder to SS office. First clerk ignored; second said great and ordered new card. Then I could get her insurance reinstated. This method might help while your finding everything.
    I went on Medicare a bit ago. Learned it doesn’t cover everything. Not sure how people manage. What a mess our healthcare system is.

  11. Find out if COBRA is an option. It will allow you to stay on Kramer’s employer’s plan (but you pay the premium).

  12. jo, so sorry you are going thru all of this. call your local ADRC office, they can guide you thru a lot of this info! Good luck best wishes.

  13. Hospitals have social workers who can help with healthcare. Ask them for help. They can point you in the right direction or even help you sign up and get you through the process. It varies from state to state. You’re doctoring in Wisconsin, so not sure if Iowa has the same options. Through a friend we found an insurance agency with an agent who helped us get into the Marketplace when my husband’s employee insurance dropped him because he couldn’t work. We were so grateful for this agent’s help at a difficult time.

  14. I really can’t help you with your needs re:insurance and such but I will be praying for you that God opens doors quickly and you both can get the help you need to fix this paperwork mess and get you both back into the swing of things financially and well as health wise.

  15. On the kidney cancer forum I belong to I’ve read that stage 4 kidney cancer patients are fast tracked to SS disability status. I don’t know if that’s the same for lung cancer. I read that when you apply online and get to a certain part there is a special phone number to call. Some have received approval in 2-3 weeks. Hopefully that is the same for Kramer. I agree with getting the doctor’s office/hospital social worker involved as they can help you navigate and will likely have specific information to your situation. Also, when my son applied for Obamacare after he aged out of our insurance we used Cobra as a bridge as we learned his new coverage would begin on the first of the next month instead of the day he lost coverage on his birthdate. Praying it all works out quickly!

  16. I was going to mention COBRA also. I’m not sure if small companies have to comply based on # of employees but it definitely will give you some breathing space if you can get it. Typically there is a 18-month time limit and you do have to pay the premium (plus 2% in most cases) but it might be worth it to give you time to learn about everything else and give you the ability go have the same doctors for a bit longer.

  17. Be sure to check if COBRA coverage is available through Roger’s employer. If the employer had more than 20 employees, it should apply. Might be less expensive and better benefits. We had COBRA coverage for a period of time, and the premium was reasonable and allowed us to keep the same benefits as employer provided. At least by checking, you would have the information to compare between that and other options.

  18. Many clinics or social service offices have an Insurance Navigator who could help you with finding the best insurance for you. As far as Kramer being bored and just watching V. He seems to be a guy wou is mechanical and likes power tools. Could he do some quilting? He could start by piecing a quilt it is mind therapy and not too taxing and he could do it in small increments of time if he gets tired. I know you have a long arm maybe as his health permits he could progress to that and maybe could even be a source of income. People are always looking for long- armers and men are often very good at it.

  19. Good advice above re: COBRA, checking with your medical providers to find a patient ombudsman of some sort and insurance navigator. Definitely keep all your receipts for anything related to Kramer’s health. Even if you just get decent box with a lid and toss things in so they’re all in one place. I’d try to organize them in general categories at east once a month, but knowing they’re all together will help a lot. Perhaps helping organize the paperwork is something Kramer can do. Not strenuous, but he’ll be doing something useful which should help him feel more useful. There may also be other tasks that have always been yours he can do o be and feel helpful. It will take a little time to figure out the new normal.

  20. Does Iowa have a Aging and Disability Resource program?…they usually are within the “senior center” buildings…they have people who can help…at no charge to you…with paperwork and insurance…we went to see one when applying for my husband’s disability/medicare enrollment…some small communities may have outreach programs where you can make an appointment too.

  21. Great advise above. Social workers at the hospital are used to these problems and questions.They were helpful when I was going through breast cancer. They may also have ways to help with the medications and any medical bills that you may incur that insurance doesn’t pay or if you find your self with a gap in insurance. Please ask if they can help in any way. They did with my cancer meds. Also, Walmart has a list that changes periodically, that they offer for $10 a script if you don’t have insurance. Its not a large list but anything helps.
    Also I would get the ball rolling with( Obama care )..Call or go to your County Social Services …..tell them the situation and see where it takes you. They may say to start the paper work now.
    Hugs and prayers….Connie and Dave

  22. Judith Fairchild

    My 2cents worth I found when I had to go on disability that state Family Services helped do everything plus covered me till my Medicare kicked in. They also S.S. also backdated my application so I got Medicare within 6 months.

  23. So many changes & challenges, both already met and still ahead. All I can say about health insurance is that the price will shock you. I hope you can get someone to help you find something good for a somewhat reasonable price with a deductible that isn’t too high.

  24. Jo, Save all your current and past, medical and prescription cards. These cards contain information you will need when you apply for Medicare. Having this information will help stop penalties for non coverage.
    Talk to someone at the Social Security office. They know a lot about disability insurance, and may be able yo advise you.

  25. Jo and family, I weep for you……..we in the UK moan about our National Health service but I wish I could take a chunk of it to help you,,,,I hope Obamacare helps …I feel so helpless at what I have please post your details again..will be telling my quilt group about your plight !.. all my love hugs and good wishes to you all Moyra from Mid Wales UK

  26. I don’t know if you want anymore “advice” but there is COBRA and the premium is higher than when he was working. There is also Medicaid available. A hospital social worker will be more knowledgeable than anyone in the dr’s office….usually. I, too, would contact a Senior Aging Office or Medicare might be able to explain some of the ins and outs, if you are able to talk to a willing person. A SHIPP office might be able to direct you also. SHIPP volunteers are informed regarding insurances when you are eligible for Medicare but may also have other information. Good Luck! Save all medical receipts, hotel and gas receipts…everything!!

  27. Rebecca Haughn

    Ok I mean to help and obamacare is no more. Try the Christian Health programs, the name escapes me at the moment, it is truely worth it. I pray for you and hope it all works out to the best.

  28. If the hospital did not set you up with a social worker and case manager, ask them to do so. Social workers will be able to help you navigate the health insurance situation. I know you are in Iowa and go to Wisconsin for care and the social worker should be able to communicate with your local hospital’s social work department. Generally COBRA is expensive. If Kramer can go on disability with his employer he should be able to stay on his regular plan and pay his premiums directly. Some businesses cover for 26 weeks and some go up to 52 weeks.

    Some state departments for the aging only help patients who are medicare eligible, but medicare is available for individuals on disability. There are attorneys who manage disability cases. A friend of mine had the need for disability for years and kept being denied until she hired a disability law firm. She regretted not doing it sooner. The lawyer was able to get disability with in 3 months after appearing in court. She paid less than $500 in legal fees and because of her financial status she was offered a payment plan. She was eligible for disability an missed years of disability income and medicare by applying and being denied. Also, if Kramer’s cancer was the result of asbestos exposure, there are law firms who handle applying for the funds set aside from companies who allowed exposure to go on and not informing employees to compensate patients. His pathology results should be able to confirm is it is the type of cancer from asbestos.

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