Hanging Around

Playing at Great Wolf Lodge
Playing at Great Wolf Lodge

No New is No News
Since I found out we are pursuing donor #2, nothing has really happened.  I know Dr. Cripe and Dr. Nelson have been in contact, but no determinations have been made.  Perhaps on Monday I’ll find out if I am going back on Blinatumomab or staying off.  As for the donor, we haven’t heard anything back yet.  Cheryl said that after she made the urgent request, the people on the donor’s side would contact the donor and they have to go through an information session on donation.  We don’t hear back until that session is complete and we don’t get any information on when that session might occur.  So for now it’s just hurry up and wait.  Hopefully this week brings more news.

Long Term Disability
On the plus side of things, I did find out that my long term disability has been approved.  The company still needs some medical records, but the payments themselves have been approved.  That’s a big relief.  I’ve learned a lot about disability over these past few months, so here are my tips for those of you at home:

  1. First off, sign up for both short and long term disability.  I can’t imagine where we would be if I didn’t have disability insurance.  Even with my payments, I was sure to sign Lindsey up for both STD and LTD when she went back to work part time.  On top of that I signed her up for critical illness and a hospitalization policy.  Chances are you won’t ever need them, but when you do need them, you REALLY need them.
  2. It sounds kind of odd, but you do NOT want your employer to pay for your STD and LTD premiums.  If your employer pays for them, then your benefits are taxable.  If you pay for the premium, then you do not have to claim the STD and LTD payments as income.  This can make a big difference as STD and LTD typically pay 60% of your salary/wage.  If taxes are then taken out of that 60%, you may only be getting half of your pre-disability income.
  3. Talk to your doctor or nurse about the forms that need to be submitted.  You are your best advocate throughout your disability.  You want to know what is being said and have the opportunity to correct any mistakes.  It’s much harder to correct information once it’s in the hands of the insurance company.

NPS and CSAT
At hc1, we use the Net Promoter Score (NPS) as a gauge of customer loyalty.  I was reading a bit more about the NPS score while I am off (you know, because there isn’t much going on) and came across the CSAT score which is a gauge of customer satisfaction.  As I investigated CSAT more via google, I saw a link about becoming CSAT certified.  This seemed like it might be a good thing to do while I’m off since I have some time on my hands so I clicked the link.  Ya, apparently CSAT isn’t just an abbreviation for customer satisfaction.  The linked I clicked was to be trained as a Certified Sex Addiction Therapist.  While I’m sure the course material would be rather interesting, I’ve decided to not pursue my CSAT certification at this time.

IU Health Must Miss Me
Prior to the delay, I was going to be admitted on 9/22.  So it was with much curiosity that my ringing phone showed an IU Health number on Saturday the 12th.  The person on the other end was asking if I was supposed to be admitted on the 12th.  Apparently that was the date that was written down.  I explained that I wasn’t going to be admitted until the 22nd and it was probably just a mistake.  And then 5 minutes later the phone rang again.  Different person, same question.  So I gave the same explanation.  I thought all was resolved but later in the day I received another call from a nurse at the transfer center, “Did you know your doctor wants you to be admitted to the hospital today?”  Again, I gave the same explanation and thankfully this was the last call.  I’m not sure how the date was entered incorrectly, but thankfully I know enough about my own care to know that I wasn’t supposed to be admitted.  I could very easily see someone hopping in their car and driving to the hospital when receiving a call like this.  Who knows what would happen then.

One Day I Will Work Again
This past Thursday I stopped by the office to say hello and check in.  It was great to spend a few hours with everyone.  It was also great that it was only a few hours, as I was tired by the end of it.  One thing that crossed my mind while I wait for a donor is “could I work a bit.”  I think right now that answer is no.  My main lingering side effects, aside from fatigue, are a mental cloudiness and finding the right words.  I could definitely sense both were happening while I was speaking with people, even if they didn’t realize it.  My job requires a high level of mental acuity to keep track of many moving parts that are handled by many different people.  Right now I’m just not there.  I was able to have a great conversation with my boss, Esther, and we plotted out a potential timeline and plan for getting me back to work.  I’m still many months away, but I do look forward to being back in the office.

A Duck Dynasty Prayer
Limbo.  It’s not just a dance you do with a stick.  It’s where I feel I am at right now.  But there are things to learn in limbo.  I thank you for patience and perseverance.  I thank you for time with my family.  I thank you for a process that is taking place to get my stem cells.  I may not see the process, but it is happening.  That is a parallel in so many ways to how you operate in our lives.  Things are happening.  You are working.  We don’t always see your hand.  But it is there.  I’m thankful that I know we will get to transplant and I’m hopeful for the days that follow.  Thank you for another day.

6 thoughts on “Hanging Around

  1. I am thankful for you. Due to a unexpected turn in my own health and a few surgeries, I lost track of you n your struggles. I am thankful you are at this limbo stage as that was not the case in your recent past. You amaze me with your strength. Keep up the great work. I continue to pray for all of you

    Liked by 1 person

  2. Even lack of progress is progress. Because it’s all part of a process that goes in fits and starts, you can check off these lack of progress stages as another step accomplished, as going through one step to get to the next step, where you can look forward to something good that will happen.

    Love, Uncle Claude

    Liked by 1 person

  3. Oh my gosh you crack me up. Waiting is always the hard part. I know the rlooer coaster Frank and I have been on for the last 10 days is enough to wear anyone down. So I can imagine how your waiting seems like an eternity.

    Continue to hold you and your whole family in prayer.

    Sending hugs and kisses
    Aunt Liz

    Liked by 1 person

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