Friday, December 26, 2014

Miscellaneous Ramblings

I hope that everyone had a wonderful Christmas.  Ours was low key this year but I always enjoy the time with family.  I also like presents too but I can live without them :)   The one thing that I want more than anything else is a cure for Pulmonary Hypertension and so far that hasn't come but I believe it will.

Every morning I watch Joyce Meyer and this morning was no exception.  It was a re-run I believe but I always learn something new or if I am struggling with some area a show pertaining to that will air. It's a little freaky sometimes.

This morning's show was about Trusting God When You Don't Understand.  This is something I always have to remind myself.    There was a segment with a couple who had lost their young son (under 5 years old) to a rare genetic disorder which at this time is incurable.  The mother stated when she found out that she was pregnant with him she prayed that he would not only be a blessing to them but to others as well.

I can so see the blessing that Nicole has had in our life.... I have learned so much from her and she is truly my hero.  I also know that she is a blessing to others as well either through her illness and the PH community as well as the way she lives and copes with it.  She is also a blessing through the beauty of her artwork.

As I watched this segment (which I have seen before) with tears rolling down my face I thought about Nicole and how I don't understand why not so much that God allowed her  to be born with congenital heart defects but more so why were her health issues misdiagnosed for 15 years.  I am in awe everyday of the things that could have happened and I am most grateful for God keeping her safe.

Unless you are a parent of a chronically ill child, and it doesn't matter if the child is 2 or 20 they still are your child, it is harder to grasp the struggles that a parent goes through everyday.  It is absolutely heart-wrenching to watch your child suffer. The hopelessness and helplessness can be overwhelming at times.  There is one particular person that was such an influence after I heard her speak about her struggles with her son less than a month prior to Nicole's diagnosis and I just couldn't wrap my brain around the strength and courage that she has everyday. She was and continues to be an inspiration to me.

I truly believe to the depths of my soul that if it wasn't for Nicole's illness she wouldn't be the artist that she is today.  Her artwork is incredible and I am so proud of how she continues to grow and do things that she never would have thought she could do.  The first time she drew a face, the first time she drew a figure etc.   I see the passion in her eyes when she completes  a piece that is she proud of.

My heart goes out to those parents that have lost children and I never, ever want to experience this and I hope that God will spare me this pain but I know if I had to choose to either live my life without Nicole or have her live her life without me I would rather live without her.

As we end 2014 and move into 2015 I would love to see a cure for PH but short of this I would love to see Nicole to continue to grow in her passion of art.  I would also pray that she remains stable and that the medication that she takes even with all of it side effects and chronic pain will continue to do this for her. I pray for continued good health for myself and the rest of my family.  It is very frustrating and stressful dealing with a chronic illness whether it is for yourself or for a child but I pray that I will continue to provide that support and love for Nicole for as long as she requires me to do so.  I would do anything for her and if this is what I need to do I will.

I would love to see others be more compassionate in regards to someone who is disabled either through a chronic illness or through injury especially when their disability may not be "visible" to the naked eye.  I would love to see others think about how they would want someone to hold a door open because they are pushing a person in a wheelchair or are struggling carrying a child etc.  I struggle everyday with being judgmental because something looks different than what it is .... I can tell you that God has really opened my eyes to this  A LOT since 2010 and continues to do so.   As Joyce Meyers says "I'm not where I need to be but thank God I'm not where I use to be."

I wish everyone a happy, healthy, safe and prosperous 2015!!!!!!!!!!!!

Monday, December 22, 2014

Frustration with reordering medications......

Just spent 45 minutes on the phone which included being disconnected once in the midst of transferring me.

I have to get Nicole's medication through a specialty pharmacy and they are shipped via UPS monthly.  We get three medications through this pharmacy two of which are oral medications and the third is her continuous medication which she receives subcutaneously through her skin via an infusion pump.

I know how much medication I have left when I call so I start with her Letairis which she will run out of first on Dec. 29th.  The customer service representative is suppose to ask certain questions like did she have her monthly pregnancy test etc. and she didn't.  They have their own calculations of when she will run out and most of the time with the orals we are in sync.  She says I can have this delivered on the 29th.... I said "she runs out on the 29th and I don't want to receive it on the day she runs out" and she replies "well there is a holiday" and I reply "on Thursday".  She then says she will have it delivered on Friday the 26th.... this is much better and I will take this.  I realize that I should have called last week to have this set up but they should have called me saying it was time to reorder and to my knowledge they hadn't.

The second medication she was also suppose to ask questions which she didn't.  I asked her how many tablets Nicole had based on their records and it was what I had which was enough for 13 days including today.  She said do you want it delivered on Friday with the Letairis and I said sure if you can but I don't think you will get insurance approval.  She said sure I do this all the time.  She then says I will have it delivered on January 2nd.    I then asked her to reorder the Remodulin and she says she has to transfer me (usually the same c.s. rep will do it all)  while she's transferring me she disconnects me (at least she called me back).  During this "hold" time I count out 13 days and find that she will run out on the 3rd.... I am not waiting until the day before she runs out to get her meds.

I get another c.s rep who is going to do the Remodulin but before she does this I tell her I need her Adcirca for a sooner date than the 1/2 shipment.  She said the rep is entering it now and puts me on hold.  She isn't able to contact the rep so she is going to fix it herself.  She changes the date to the 30th which is still a little to close for comfort but I will live with it.  She then says she wants to confirm that the Letairis will be delivered on 1/2 and I said "no" she runs out on the 29th.  I am so glad that she confirmed this or I would have been speaking to a supervisor on Friday.

She then tells me that it is to early to re-order the Remodulin which means I have to call twice a month to reorder her medications.  I will call back on the 31st to reorder.   I have re-ordered all her medications even when they are a couple of weeks out for the last 4 years.

When I call back I will also find out if I can get a email or something from UPS stating that I will receive a shipment so I know that it was shipped when it was suppose to be.

This is so frustrating and this is where most of it comes from on a monthly basis is from the pharmacies.

Sunday, December 14, 2014


It has been awhile since I have written on this page.  I had created a facebook page called A Day in the Life and was using this page to write about my daughter and our journey with her chronic health issues.

I did like updating the page and did so quite frequently because it was convenient but I have decided that I am going to come back to blogging on here.

I don't know much about how to step up a blog or making it look pretty like some of the blogs that I see but I hope that I will learn as I go.

I will still forward my postings here over onto facebook and will not take down the page.  I will probably share things on there like articles and such that pertain to Pulmonary Hypertension.

I am excited about coming back to this type of forum.  I am not going to put pressure on myself by saying I will blog once a week, twice a week, once a month etc.  I will just do it when I need to update about my daughter.

I am grateful for the followers that I have on my facebook page and hope that they will follow me over here.