Friday, December 30, 2011


As we wind down 2011 and look ahead to 2012 I like to set goals for the year... don't like using resolutions. 

I would like to lose a nice little chunk of weight ... lets just say it's over 20 lbs. but under 50 lbs.  I will start eating better which basically means portion control and not as many sweets.  I will also try to motivate myself to do a walk video three days a week and some weight training with either weights or a resistance band two days a week. 

I want to also get the clutter out of my life... this includes my house, my body and my mind.  I want to keep it simple.  I would also like to come to terms with my life and how it is.  I would also like to work on my faith and personal relationship with God. 

I have to make a decision about whether or not to sue on behalf of Nicole for medical malpractice.  I was told last year by an attorney that the statute of limitations had run out but one of Nicole's doctor's told me that it is the age of majority.  I have tried to contact several attorneys via their contact section on their websites and have had no response.  I don't know if this is God's way of telling me to let it rest or what.  I also have to think about what this would do to her SSI and Medicaid which is the only insurance she has. 

I think a very hard think for me this year will be Nicole turning 18.  I know she won't be moving out or anything like that but she will a "legal adult" even though she's still in high school.  My job as her parent is basically over as I have raised her up.  She is a really good girl and I am proud of the young lady she has become.  I guess I feel like I have a little of the empty nest feeling even though she is still at home if this makes any sense.  I really am not her parent in the sense of the word that she's a minor.  I will be getting power of attorney or having her do an advance directive or something so I can continue to speak on her behalf and make the decisions for her if she can't pertaining to her health issues.  This all brings up issues of  who and what I am without being a mom.  I don't feel like I have any talents or gifts. 

I really hope that 2012 is a good year.  I know it can always be worse but I wouldn't have considered 2011 one of the better years, however, in a lot of ways it was better than 2010. 

I wish everybody a happy, healthy and prosperous New Year.

Sunday, December 18, 2011

I don't understand...

I don't understand and I haven't for almost two years.  For those who know me well you know that I absolutely love Joyce Meyer.  If you don't know who she is she is a teacher of the Word.  I start my day every morning (unless I oversleep or I have an exam) with her.  I was watching her this morning and the message was so appropriately titled " Trusting God When You Do Not Understand".  This was very powerful and emotional for me. 

I haven't understood my life for almost two years since that Friday morning on January 23rd when I found out that my then 15 1/2 year old daughter, my only child, had been born with a large hole in her heart that had not been detected and because of this lack of diagnosis she now has a rare, incurable lung disease called pulmonary arterial hypertension which has caused irreversible damage to her lungs. 

I don't understand ... I don't question why or how she could have been born with a congenital heart defect as they are the most common birth defect in the United States with approximately 1 in 125 children having one.  What I question and can't wrap my brain around is how did it take 15 years for it to be detected.  How did a cardiologist when Nicole was 7 years old read an EKG during an endoscopy as normal.  Nicole has never and will never without a heart transplant have a normal EKG.

I don't understand why my daughter and my family have to go through this.  I cry everytime I think or have to say that my daughter is terminally ill.  I know she could be sicker with her disease and I am grateful for her being stable but I still ask "why God why?". 

A friend of mine, Kathy,  showed me something this week that I had never seen or thought about or if I did I ignored it.   I have believed that I am a person of great faith but I believe I am a person of great faith if God doesn't allow my daughter to die.  I can't say in all honesty that if Nicole were to die I would still have faith and believe.   I don't believe I could live my life without her and my life would have no purpose.  I love nobody more on this earth than I do my daughter, just like any other parent. 

Joyce Meyer shared a story of her diagnosis of breast cancer twenty plus years ago and she questioned why this had happened when she was  praying for others with cancer and watching healings.  I could so relate to her.  In April 2009, less than one year before Nicole's diagnosis I went to the obgyn to get a script to get my hormones tested as I was having some issues with my memory and thought maybe it was related.  It turns out that the annual pap I had had in July 2008 had come back abnormal but I was told it was normal from the company who does results.  I had to have a biopsy etc. and was diagnosed with carcinoma-in-situ which literally means "cancer on the lining of the cervix".  After the out-patient procedure in which they burned a portion of my cervix and the pathology report came back I had two choices ... one I could wait three months and get another pap to see if the procedure had worked and I had a normal pap or I could have a hysterectomy.  Long story short...I ended up getting a hysterectomy and there was no cancer in my cervix and the original procedure had worked.  I didn't need any further treatment.  Joyce said she heard God say to her during her cancer ... I don't want you to question this I want to hear ... I trust you... You're good... I believe you love me... and all things work for good to those who love You and are called according to Your purpose. I can look back on this experience and see now what the purpose of this was for me.  I am so grateful, even though I didn't want the surgery, for things working the way they did as God knew what my life was going to be like. 

My goal for 2012 is to work on getting my faith to be unconditional and also to stop questioning why this has happened to Nicole and my family.  I have to accept that I probably will not understand until I am standing before God.  I have to believe that even through the difficult days, which seem to be everyday, that all things work for good. I must try and bring myself to stop asking "why" and just say "I trust you Lord".  I'm not sure how I can do this but I must try for myself and for Nicole.  I want to be able to help Nicole's faith be restored also and to make her see that she has a powerful purpose for her life.   I need to do this in every aspect of my life... whether it is with our financial struggles, personal struggles, health struggles etc.  I must believe that God is good.... He does love me... and all things work for good for those who love Him and are called according to His purpose. 

Wednesday, December 14, 2011

What will I get a break?

I'm trying to stay grateful that Nicole will start receiving Medicaid associated with her SSI  on January 1st but honestly, I am so confused after calling Medicaid options.

In some ways I just want to stay with KidCare because at least I have jumped through the hoops and know what I have to do but I know for Nicole's future this is the best.  Nicole at this moment has straight medicaid but I will have to pick a plan for her which I will do but until this time I have to call the labs, the durable medical equipment company and the specialty pharmacy (these are the most important and recur on a monthly basis) to see if they take straight medicaid and then what medical plans they take so I can stay with them without having to switch again.  I will go to the website she gave me that is suppose to have the list of plans.

It really scares me... I am in tears with frustration and confusion regarding all this and I can't imagine how Nicole will be able to deal with this in Sept. when she turns 18.  I get a lot of criticism from my family that Nicole needs to get use to doing all of this herself which I do agree but I also know she isn't ready for it maybe some are but not her.  I spend so much time handling medical issues for her it is my part time and sometimes full time job.  Nicole will be a senior when she turns 18 and doesn't have the time to do this.  I truly believe that I need to get power of attorney so I can have permission to talk to the medical people on her behalf.  I need the strength and guidance to be able to do this without worrying what others think even though they feel I am controlling Nicole's life.  

I just want to scream when will I get a break?  I get a couple of days off with no medical issues and then I am right back at it again.  It seems to take over my whole life and I find it hard to focus on other  areas of my life like cleaning my house. 

I know that God will give me the strength but I just don't feel it right now. 

Friday, December 9, 2011

Insurance/SSI etc.

I finally was able to get through to Medicaid regarding the notice I received in the mail last week.  I did get confirmation that her Medicaid associated with her SSI will begin on Jan. 1st., 2012 .  I am very happy about this. 

My concerns are the same as they were with the five week months.  It looks like my husband will have to take those weeks off without pay so she will not lose her benefits.  This also concerns me but it will be better than having no insurance at all.

I will be on the phone next week with Florida KidCare who she has insurance with now to let them know that she will not be needing it after Dec. 31st and hopefully the premium that I paid for January they will reimburse me for. 

The bigger issue is the benefits.  I was given a number for Medicaid Options and I can call them and find out what insurance company is used, what durable medical equipment company is used for her oxygen, what speciality pharmacy is used as two of her medications are restricted and they are delivered to my door, I also need to know where she can get her labwork done. I had to go back to Labcorp with FKC (kid care) and I dislike them very much and would like to go back to the hospital and have it done. 

I hope that I will not have to go through all the headaches that I did before. I think that as long as I have the same speciality pharmacy I should be good.  If I have to use a different pharmacy I will go through her local doctor as it will be done in a more timely manner.  I will need to get new scripts. 

I know it will take awhile for me to learn the system and figure everything out.  I will go back over my notes from talking to FKC and the insurance company and get a list of questions that I need to ask and have them written down for Medicaid Options. 

Wednesday, December 7, 2011

Nicole's Artwork Part 2

Here is a few more.  All of these she did free hand by drawing them first.  She may have colored them herself or she may have scanned them into her computer and colored them with her pad. 

Nicole's Artwork Part I

Nicole is a very talented artist.  I think so but I am biased.  She has had no formal art training/classes except for a 3D computer class.  She would like to be a computer/cartoon animator.   Both of these drawing she did on her computer with a drawing tablet she has. 

She also creates her own videos and puts them on youtube under Vetrina271.

Monday, December 5, 2011

Christmas Traditions

Thanks to Trish I have a new blog group that I'm apart of.  The question is what are your Christmas traditions. 

I must admit that since my daughter's medical diagnosis in January 2010 I have not been able to get in the Christmas spirit whether it is putting up the tree or going shopping and I love shopping.  I think some of this ties in with our financial issues.  I try not to think about whether or not this may be the last holiday that we spend together.  So much changes when you have a child or other loved one with a chronic, incurable illness/disease. 

One of the traditions that I really enjoy is putting up and decorating the tree.  I would have put up the tree this past weekend but we had company so I will do it this weekend.  Nicole and I  decorate the tree while watching a Christmas DVD with some of the classic's Frosty, Rudolph etc.  Sometimes Nicole will have hot chocolate and I will have coffee.  It is tiring for Nicole as she only has so much energy but I know she enjoys it. I have also bought her an ornament every year since she was born so when she had a place/family of her own she would be able to decorate her tree. 

Another tradition that I really enjoy is riding around looking at the Christmas lights which we usually do on Christmas night on the way home from Grandma and Grandpa's house.  I have found though a lot of people go to a relatives house and the lights aren't on. 

I hope that I will be in the Christmas spirit a little more.  I have started Christmas cards but only have a limited number as I refuse to buy more until after Christmas when they are very cheap. 

November was PH Awareness Month

I don't think that I ever posted this on my blog although I did on facebook.  This is a poster that my daughter, Nicole, did for Special Needs Awareness day at our homeschool co-op.  She did a fantastic job, unfortunately, she had a sinus infection and bronchitis and wasn't able to attend.