July Update

Wow, I can’t believe we are nearing the end of July! Things have been totally crazy here. I started working from home and the VERY day that I started I received news that Mike was being discharged from hospice. The nurse brought over a form for me to sign stating non coverage with the insurance company, so after filing an appeal and being denied, we have a few small adjustments we are making. I was finally falling into a nice groove of accepting help from a home health aide 3 times a week with showers and shaving, and a volunteer once a week for me to have some time out of the house.

I’m determined to succeed at this business, so I’ve put in long hard hours taking photographs of the clothes to post online, marketing on social media, accounting, inventory, etc.  Many consultants do a mixture of online sales, in home parties, and events. I can’t leave the house often so I’m really trying to build an online customer base. It’s so crazy that this all happened the same week I was launching my business. I worked through a lot of tears, so its a good thing I’m working from home!

Mike’s nurse made sure we had enough medicine to last until he could get into the doctor and they picked up the hospital bed.  He has an appt with his oncologist this week and I’m guessing an MRI will be ordered.  It’s scary not really fitting into the insurance’s hospice guidelines, yet not having a normal healthy life either.

Speaking of not having a normal life….I don’t know if I have any long term caregivers on here that this will speak to…but it is so hard not being able to get out and enjoy the summer. I’m not going to complain, but I will admit that it’s a struggle.  I’d love to simply leave the house to go walk around a store, go to the beach, or go to the park.  Over 4 years past diagnosis and this whole ordeal is still like a jail to me some days. I would do it all over again for Mike, but for the other caregivers that read this blog, I just wanted to address that the struggle is real. It’s even more so a jail to Mike as he really can’t enjoy things he once did.

I choose to be thankful for the things I CAN do though and I’m thankful for a lot.

I will keep you all updated! For now Mike is off hospice and it really feels like the safety net was pulled from under us, but I have no doubts that everything will work out. I have said often that I feel like I lost the village that keeps my world running smoothly.  I know that even though they had to discharge us, we are not alone.

3 responses to “July Update

  • Shannon Edmonds

    I will be praying for you. Wow
    I can’t imagine what you are going through. I only went through it with my husband for 9 months. You can do this. Take it hour by hour. Hang in There

  • tina johnson

    Im proud of you. You are doing a great job taking care of your family. Its a struggle most people couldn’t do. You have strong faith in the Lord and He is always with you answering your prayers. You will be blessed many times over for your love and devotion to Jesus. You have a beautiful heart. Love & Prayers, y’alls cousin,,, tina

  • Pamela

    I am just beginning the whole unbelievable process with my husband. He was diagnosed early June and had a great resection, so we were told. He is now in week five of the six weeks of radiation and chemo combined. I have been reading your blog since it is continuous and gives some real understanding of what your family is going through. I continue to work full time at this point. When John was diagnosed, that meant the end of his job with the railroad and more than half of our family income. I read an article…No One Can afford a Brain Tumor…and it is so true. I am still reeling with all the financial decisions that must be addressed. Thankfully, he was and yet will always be a railroad man and they take care of their own. Not sure what is to come, but as they say at Duke, there is always hope. We hope for a miracle everyday. Thank you for you heartfelt words and sharing your challenges with others of us who are facing similar paths. We will pray for you and your family.

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