Saturday, June 11, 2011

What a Week ....

What a week it has been.... I know it could be worse, always could be worse.  The week started off frustrating.  We have really known for a while that we would have to file bankruptcy after my husband was laid off.  I have asked him and asked him to find an attorney.  He's not home all day and doesn't get the dozen calls everyday.  Finally, I just did it myself.  I told him about the attorney on Monday evening and he hemmed and hawed about it.  I asked when he wanted me to make an appointment.  He said "I don't know".  This and "I don't care" are the two most popular phrases in my house that I get from my husband and my daughter.  It is so frustrating. 

Finally, on Tuesday evening I asked him what time and what day and he told me.  I had done all the leg work all he had to do was show up for the appointment.  My daughter, who I love very much, same with my husband, has no motivation to do anything.  I know that she is very ill with a incurable illness that she's had to try and deal with the past year.  We all have but I feel that I have to be strong and carry everyone.  I just feel that she has so much potential that she's wasting.  All she wants to do is play on the computer and draw.  I'm not saying there's anything wrong with this but everything in moderation. I'm sure some of the issues are typical teenager.

I had to deal with doctor's offices because people don't know how to do their job.  I had to call the hospital because they don't know how to fax over lab results to the issuing doctor.  I wasn't happy with the results as her platelet count continued to drop and is now right above the critically low stage which is 100,000.  I want to know why her count keeps dropping.  I am told that her hemoglobin and red blood count is low also for her.  To look at the numbers she is borderline high but because she is cyanotic (blue) so her numbers should be much higher.  I was suppose to receive a call on Friday after the doctor researched her medications and such to see what to do.  I never received a call. 

I have waited over a week for a response from her ph specialist at Shand's hospital regarding  a couple of questions that her rheumatologist had regarding medicines for her joint pain.  I always seem to wait so long for a response from them.  I did get a response from her local cardiologist. 

Today was no better when I seemed to have lost my debit card.  I completely emptied my purse and all the contents and went through them several times.  I used it at the grocery store and shoved it back in my purse.  I called the grocery store and dollar store (didn't use it at the dollar store but thought maybe it fell out) but nobody had returned it.  I went to cancel it and was on the phone with customer service when my husband starting yelling at me about it. I had to tell the person I would have to call them back.  I told my husband that he didn't help the situation because he made me feel like I was stupid and worthless even though he said he didn't do it but I made myself feel this way.  I told him to do whatever he wanted about it I wasn't handling it.  All he could think/talk about was how HE was going to be inconvenienced. 

I have been very good about my online classes but won't be able to study until at least Thursday of this week which I can't go more than a day without studying or I can't  expect to get it done by the due date. 

I really do feel so much better when I write.  My computer is giving me so many problems because the track pad (laptop) which I don't use because I like a mouse is so sensitive it does weird things and I don't know enough about Window 7 to adjust the sensitivity. 

I feel invisible.  I feel that nobody offers to help me with anything whether it be my husband, my daughter, the rest of my family or friends.  I feel like I have to make every and all decision because my husband/daughter either can't or won't make any.  I feel so alone trapped in my own little box.  It is very difficult when you have financial burdens and also have a daughter who is chronically ill.

I will try and stay positive and hope next week is better. 

Sunday, June 5, 2011

Week in Review

Well this is my first attempt of writing at least weekly.  We are out of school now so I must combat laziness and Nicole from being on the computer all day long !!!! 

Nicole had a rheumatologist appointment on Tuesday.  Her first appointment was in Feb. I really like the doctor but had problems with the nurse who I guess has been let go so lets see if I have better luck with getting paperwork and calls returned.  She addressed Nicole's  vitamin D deficiency which isn't at the critical state but still low.  She has her taking 4000 IU's of vitamin D daily for the next three months and then her vitamin D will be re-tested and see where we are at.  I guess vitamin D deficiency can cause joint pain so we aren't sure at this point if her pain is related to the Ehler's - Danlos syndrome or from vitamin D.  She also said she wanted Nicole to start walking on most days.  We start out just walking to the end of the street and then work our way up.  She would like to see her participate in cardiac or pulmonary rehab but she can't order this her cardiologist and/or pulmonary hypertension specialist must. She had blood taken but I'm not sure what for... should have asked.  I should have asked for a script because they charge $10 for it and she had to get her monthly blood work which we decided to wait a couple of days so she didn't get stuck twice in one day and she wasn't feeling well.    We will go back in three months. 

Rick had a cyst removed from the back of his neck so I have had too change the bandage and clean it etc.  yuck..... I would rather clean up puke :o) It looks like it is doing well and I don't see any redness or sign of infection.

I made a post yesterday that I had posted on Facebook on Wednesday I believe about me becoming a peer mentor for Tyvaso.  I had an interview which was 1 1/2 hours long on Friday evening.  I think it went pretty well.  They said I will be an official peer mentor when I complete the training and take and pass a quiz.  The training is being revised and they have to have approval of it before they can send me the link so I won't be able to get started for at least a few weeks.  They will also send me a welcome pack when the revisions to this are made also.  I'm really excited. I will have the chance to talk to people via email/phone about the medication and answer any questions they may have.  I will also have the opportunity to travel and speak at events at their expense.

On Friday, I took Nicole to the hospital for her bloodwork which is done for another month.  We will see if they took her CBC and her platelet count is low still or most importantly gotten any lower.

I believe that this is about all of my news from the week.  I know I live a very exciting life but it's mine and I love it.


Saturday, June 4, 2011

A New Chapter in My Life!

 This is a post that I wrote on facebook on Wednesday of this week: 

My life and the life of my family changed forever on January 22, 2010 with Nicole's diagnosis.  Prior to this, I didn't know what my purpose was or what I was called to do.  I believe that my purpose is to be an advocate and voice for Nicole and for pulmonary hypertension and congenital heart defects.

One thing that I have learned in the last year is to wait to hear from God.  I am so proud of myself that I did this when I thought He spoke to my heart about training to be a pharmacy technician and He did provide for that. I know that this is His calling.

My commitments that I have had with NHE (homeschool group) are coming to a close and my involvement with the group will probably be minimal.  I have made some wonderful friends who have taught me so much.  I don't think that I would have been able to speak in Hawaii, do the video for Hawaii, speak at a NHE monthly meeting about Nicole's illness to the last speaking engagement I had on the radio a couple of weeks ago if it wasn't for the four years I was on the board at NHE.  I truly believe this has prepared me for the next chapter in my life.

Last year I met Colleen Brunelli through Generation Hope and she took the time out of her busy schedule to call me and give me encouragement and tell me about Tyvaso, which is one of the medications that Nicole takes for her PH.  It turns out that she was a peer mentor for Tyvaso and answers questions etc. for people starting the medication.  I was so impressed by this that I felt that this is something I would like to do.  One of the requirements was you had to be on the medication for six months.  Well, today it has been six months that Nicole has been on Tyvaso.  I contacted the peer mentor group on Tuesday to find out the procedure I had to go through and training etc. and talked to them yesterday.  They told me that I was in and I have an interview with them Friday evening.  I am SO excited.  If I can help others like Colleen helped me I am blessed.  When you have a child that has a chronic illness with no cure you feel helpless.  You have lost all control and you can't make them better or kiss them and make it go away.  I believe in my heart and with all my heart that my studying for a pharmacy technician degree and becoming a peer mentor will help Nicole first and for most and a lot of other people.  I hope to become more involved in PHAssociation also and I believe that this will happen but only if it's God's will.

To say that I'm not scared on this new path because it is scary for me, for Nicole and for my family but it is a road that I must take whether I feel like it or not.