Posts Tagged ‘illness’

New Book Giveaway

Hi Everyone,

Just a quick note to let you know that today is the last day of my book giveaway on goodreads.  I’m excited for you to read the new book as it has some neat contributions – my 9 year old son wrote some insights, my 7 year old daughter illustrated the book, and a friend’s eulogy to Jim is included in the book.  It is entitled When Miracles Aren’t Enough: The Lessons Tragedy Taught Me.  It has been well received and I’m excited to be giving away 20 books.  Please share the link as well with your friends.  Thanks so much!  Erica

Here is the link to enter the giveaway (again make sure you do it by the end of today – Friday March 4th): https://www.goodreads.com/book/show/27314454-when-miracles-aren-t-enough

 

“God Is” in Times of Trouble

English: Robin Roberts in J. Crew Collection a...

English: Robin Roberts in J. Crew Collection at The Heart Truth’s Red Dress Collection 2010 (Photo credit: Wikipedia)

The Light of God surrounds me.

The Love of God enfolds me.

The Power of God protects me.

The Presence of God watches over me.

Wherever I am, God is.

This is the prayer that I read over and over again from Robin Roberts of Good Morning America fame.  She was interviewed recently and apparently had been asked about this prayer so often they reprinted it in the article.  I understand why.  It is powerful.  It is beautiful.  It is simple.  And, it touches the important highlights.

This comforting prayer now lives on my desk and I see it daily.  I am reminded of the strength and perseverance of the woman who introduced it to me.  Robin Roberts fought her own health battles and similar to the health battle that my husband is tackling, she often didn’t know what tomorrow would bring or how many tomorrows were left.

This comforting prayer reminds me that how you choose to see your world is your choice to make.  During troubled times, you can concentrate on the good that is present.  You can decide to be grateful for the good that surrounds you.  Even though adversity may be on your doorstep, you can look past it or through it and see the light that is present.

During troubled times, God provides comfort.  God sends people during troubled times to help and provide comfort directly.  God sends signs and messages of better days ahead.  All you need to do is pay attention and to be open to them.

Remember, regardless of what is happening in your life, both good and bad, during glorious times and times of trouble, God is.

Wow! Is the Medical Community Totally Insane?

It is truly remarkable how many hours, weeks, months I spent on trying to sort through items related to my husband’s medical condition. Because my husband Jim cannot talk or use his hands easily, I am the person who needs to answer questions, fill out forms, call (endlessly) for help, clarification, follow-up, etc. etc. Every time there is a new bill or form that comes in the mail, my heart sinks. Not only is it depressing, but it is so daunting, energy-draining, and frustrating (to say the least). My latest months-long adventure has been so unbelievable that I needed to share it with you.

 
To make a very long story short, when Jim went on long-term disability we were forced to go on Medicare. We still have our private insurance, which now is considered secondary, and we still pay the same amount of money for the policy (it hasn’t gone done even though we now have Medicare as primary). Well, the complications, pains, and frustrations that come with this change of status is mind-blowing. Everything takes forever and the rules with what “you didn’t have to pay for before” and “sorry, you now have to pay for” make no sense (and it is always changing so I can’t even try to figure it out).

 
A year ago Jim was rushed to the emergency room – a scary time that fortunately turned out to be only a scare. While Jim was there, he had a chest x-ray, received some medication for anxiety, got rehydrated and took some Combivent – basically the inhalers that many people take who have breathing problems such as asthma. After the visit, the bills came, the explanation of benefits, the names of physicians on forms that we never met, items to be tended to in general.  Back and forth things went with the hospital, us, Medicare, the private insurance company. I never knew what was happening, had to make countless phone calls, and wait on things to be mailed to me. Medicare couldn’t send things directly to the hospital or the insurance company because apparently they had done it already and the rule says “only to the patient” after that. So more weeks went by, more months…

 
A year later (yes, a YEAR!) I am finally thinking I have things figured out – got my new letters from Medicare, etc. – and I called the hospital. Speaking to a very kind woman, she tells me the balance on our account is now $0. I was so relieved. I still didn’t really understand what had happened, but I decided not to press my luck and just go with it. Then she tells me the problem was over Medicare’s new rules about self-administered drugs. Anything that is placed in your eyes, nose, mouth, or ears is considered self-administered and Medicare won’t pay for it (and by default, our private secondary insurance doesn’t pick it up either).

 
My obvious next question was “What did Jim get that was self-administered?” She told me she couldn’t tell me on the phone, but that she could mail me the summary sheet of all the expenses Jim tallied up on that visit. The itemized summary came days later (something I had never seen in the year of trying to sort this out – point interesting in and of itself). The price day of the self-administered drug was $1,559. When I looked to see what it was it said “ipratropium albuterol sulfate”. I googled this and was absolutely, totally, and completed stunned. It is Combivent (“puffers” or “inhalers” as many people call it). I have a copay of $60 on this when I pick it up at the pharmacy. The hospital was charging close to $1600 for the two or three puffs they gave Jim when he was in the hospital.

 
Unfortunately this is not an isolated event.  I continue to be amazed at the illogical, constantly changing the rules, and “make it as hard for the patient as possible” attitude that I encounter.  I do believe the healthcare industry has gone completely mad. How can a $1600 two puff inhaler charge be justified or explained? It is not logical. It is definitely crazy.

Mothers and Others Make the World Go Round

Mother & Child

Mother & Child (Photo credit: Andy Magee)

I was struck upon reading the numerous stories in Miracles & Moments of Grace: Inspiring Stories from Moms that the common thread appears to be two-fold: genuine gratitude and a true desire to care for someone other than ourselves. My story is one of the chapters in the book where I retell how the conception and birth of our second child was a sign to my very ill husband Jim and I that things were going to be alright. I knew the timing of her conception and the message she was giving to us was to continue the fight, the hope, and to believe that things could improve and would improve in due time. Now 4 years later, we continue our battle and continue to believe better days are ahead, but wonder how much longer it will take? Jim has chronic Lyme disease with ALS symptoms that have hit his neurological and muscular systems hard. His progress seems painful slow and doubt over his prognosis can plague me on a regular basis. Whenever I start to go down this dark path of fear, I am reminded to stop and believe when I look at my daughter. She is all spunk, with a willingness to take on the world, and I am reminded that this is exactly the right attitude to have. Then I am reminded what a privilege it is to be her mother. How grateful I am to have both my children in my life and how fantastic it is to be able to help care for and love another human being.

And, of course, you do not need to be a mother to take on this caregiver and nurturer role. There are so many people in our lives that help us care for, love, and mentor our children. I hope they receive the blessing back from the kids that they are conferring to them – the blessing of connection and care. The blessing of helping and influencing.

So whether mother or not, what a wonderful and very cool thing it is to be able to feel so connected to someone that you look forward to both the happy and sad times, the fun and the dull, the exciting and the scary. For each of these moments and events in life provide an opportunity to experience fully what it means to live a life worth living.

Please check out this new wonderful book and order your copy today

%d bloggers like this: