Friday, March 25, 2011

Forgiveness

If you don't know already I am a HUGE Joyce Meyer fan and I watch her every single day and get up very early to do so when it is quiet in my house.

She has been teaching this week about forgiveness.  I have a couple of people who have offended me and I haven't forgiven.  It doesn't matter if they know that their actions or lack of actions have hurt me.  I need to forgive for me not for them.  I need to let go so I can move on with my own life.  I pray for them and ask God to bless them and their families.  

It has been very difficult over the past couple of years and my family has gone through some life-altering events.  It has affected a lot of relationships and the interaction I have with them, some in good ways and some in bad ways.  Sometimes, we (okay I) expect too much from people especially with  things that they can't give me and I really just need to accept it and let it go. I need to put my expectations in God but what do you do when even God doesn't seem to meet those expectations?

I found this awesome website called caregiving.com and they have webinars and such.  I have only listened to a couple of them but they have helped me so much and really made me think about life and the people in my life.   When you go through a life-changing event(s) your whole perspective on life changes.  Not everybody in your life will care or understand and reach out to you.  Sometimes,  they just can't for whatever reason.  This can't be taken personally and just let it go.  I am working very hard on this.  I need to focus on the things I can change and not the things/people that I cannot. 

Wednesday, March 23, 2011

Eye Openers

I have not had a very good last few days... just a lot of stress with different aspects of life.  I was watching Joyce Meyer (like I do every morning) and she was talking about running from God and she was talking about Jonah.  She was quoting scripture from that book.  I have the Everyday Life Bible which has notes and commentary from her in it.  While she was reading Jonah 1:1-3 there was a life point that she put in about these scriptures and this really hit me smack between the eyes.  I guess I could say this is the story of my life for the last 2 years.
" Running from God does not help us to be at peace with Him.  If God gives you an assignment, embrace it.  If you do not want to do it or if you find it exceedingly difficult, ask Him to help you have the right attitude about it and give you the strength to fulfill it."
Wow.... is all I can say!  The problem is that changing the attitude is very hard and most days I don't feel that He is helping me do this.  I feel like I am always running from what God wants/is telling me to do or that He wants me to do things in my gut but they don't pan out.

When we started reading in Jonah 2 she writes:

"No matter how desperate or hopeless your situation, no matter how far away God seems, know that God hears your prayer and will help you."

Man, I can only hope that this is true... most days I am desperate and hopeless at our situation, and God seems like He just doesn't care or isn't  around... I can only believe and hope that he hears my prayers and he will help our situation not be desperate or hopeless.

Tuesday, March 22, 2011

One Year Ago Today ....

Rick lost his job of 25 years.  They gave him a severance package which was a blessing.  It says in the Bible in Romans 8:28 that all things work for the good, but quite frankly, I don't see how this is true in this case.  It has been a nightmare.... Rick was out of work for four months and then started working for his brother at his auto repair shop making half of what he was.  He really hates working there because his brother yells at him and puts him down on a daily basis by telling him he isn't worth what he pays him, but he needs the job.  We are barely making our mortgage payment and the creditors have started calling multiple times a day.  I can't give them what I don't have.  It will come down to what should be paid our COBRA or our mortgage which is a total no brainer..... COBRA.  My daughter can't be without health insurance or her medicine or she will die.  I am grateful as I know it could be worse but somedays I struggle to believe that God is good and that he wants what is best for me.  It will probably come down to us filing bankruptcy also.  I know that we have made bad choices and have lived above our means and maybe this is our punishment. 

I feel bad because I don't have a job but I truly believe in my gut that I must be at home even though Nicole is sixteen and can take care of herself.  She does have a chronic, life-threatening illness and if something were to happen I need to be available. Rick has the car during the day and doesn't get home to at least 6:30 p.m. I don't drive because of panic attacks which makes me feel bad because I feel like I should be able to suck it up and just do it, plus I get judged and ridiculed for it.    Maybe, this is just an excuse. I have tried all of Nicole's life to find some type of work at home business but haven't been successful except selling Avon which I didn't make any money at because I spent all the profits on buying "stuff".    I have always believed and learned to trust my gut but in the last couple of years it seems to be deceiving me.  When I was diagnosed with my carcinoma in situ I felt God say to me that I needed to get my house in order and clear out the clutter. I have resisted this and haven't done so.  There's a very real possibility we will lose our house and I look around and know that 95% of what we have we will have to sell/give away.  I see why God put this too me now. I will make every effort to do  so at this point. Around the same time I felt God leading me to quite selling Avon but I resisted again and continued for another year, even after Nicole's diagnosis.  Last week or so I was grading papers or something at my desk and I felt God speak to me again that I needed to go  back to school for a pharmacy technician as I believe in some way this will help Nicole.  I don't know why I believe this because we don't have any money and if anybody should go back to school it should be Rick so he can find a better job where he may make more money.  All he knows is cable.  I know with God all things are possible but I'm not in my 20's or 30's and will turn 50 this year.  I am just to the point where  I can't rely on my gut anymore.  I have also had some other gut feelings that I won't share but they have not come to pass either. 

I don't want sympathy and for people to feel sorry for me as I know we all have struggles and our own problems but I just feel the need to vent.  Somedays I don't have faith, hope or believe in miracles as we need one financially and one for my daughter's health.  Most days it is just a struggle to get through it and I count the hours until I can go to bed at night and sleep so I don't have the worries etc. 

If you have read this far .... thanks.  Also, I would just like to apologize for my lack of grammar and punctuation skills which I was never good.

Hugs:o)
Jane

Saturday, March 19, 2011

Additon to Interesting letter

I forgot to mention the part that really choked me up...for now, take care of yourselves, especially you Nicole, and remember what I asked you to do... spread the word that others with PH need to be advocates and to never give up. 

He is such an awesome person and I know that he will be blessed.

Interesting Letter today

I received a very nice letter today from Jay one of the senior vice presidents at United Therapeutics today.  It basically thanked  me for the card that I sent to him thanking him for his kindness in Hawaii and letting him know what a pleasure it was meeting him. 

He had asked Nicole to do a piece of artwork for him so in the thank you card I asked him what his favorite cartoon character was and/or what he would like her to draw.  He made a couple of suggestions.  He also said that either his office or Mindworks (the multimedia company they use) would be contacting me in the near future for some information and coordination of an activity he hopes we will enjoy - he especially knows Nicole will. I'm not sure what this is about.  The only think I can think of  is that Mindworks received a new Macbook Pro laptop that someone in United Therapeutic donated to Nicole.  I will be shipping Nicole's current Dell laptop to their office and they will be transferring all her stuff onto the new labtop and then reformatting the Dell so I will be able to use it.  My current laptop is five years old and the keyboard is having issues so I'm happy about this but Nicole doesn't seem to be too happy as she will miss her laptop that was a birthday present from her grandparents when she turned 15.  I think she will like the Mac better and it is suppose to be much better for graphics which will be great for her being that she's an artist. 

I know that since our trip I had felt that Nicole had been forgotten because I hadn't heard from anybody in UT or Mindworks.  I guess I have to realize they have other customers, personal lives etc. and that I am expecting too much for people.  This is a real issue that I have.  I really need to put my expectations into God and not on people because they will always let me down but God will not. 

Troubles are often the tools by which God fashions us for better things.

Friday, March 11, 2011

Just some ramblings

I was sitting at my desk yesterday doing something on the computer or grading Nicole's schoolwork I'm not sure which but I got this intense feeling or something I can't describe... that I need to go to school to be a pharmacist technician to start... now this is just crazy for several reasons ... one (and I know this isn't a good excuse) I am too old to be thinking about going back to school... by the time I finish I can retire... two...I don't have enough time to do a lot of other things how do I have enough time to go to school...three... I don't have the money to go to school especially considering Nicole will be going to college in a couple of years and four I would have to do it all online and I don't know if that can be done. It is just pure craziness but I feel that this is something that I need to do.... I guess if this is a GOD thing then he will make it happen. The problem is I sometimes become overly obsessive about things and two I don't have any patience and I want what I want NOW...

Friday, March 4, 2011

Gainesville

I'm sorry that I didn't write this yesterday after we got home.  I was up at 4:00 a.m. so I could have my "quiet time" and my coffee before I got Nicole up at 6:00 a.m. Going to either the ph doctor or cardiologist is so emotionally crueling for me that my mind just wants to shut down.    We left shortly after 7:00 a.m. Nicole slept a little on the way up (it is about a 2 1/2 hour drive).  We found it right away this time and even caught the little golf cart shuttle and was checking in 20 minutes early :o)  Nicole was weighed, height check, O2 stats check bp check.  It is funny how nurses react when they see her numbers as they are low.  We were then told to go back out in the waiting room.  We waited some more and then they called us again and Nicole had her echo.  It is very emotional for me and I don't know why (even though I think I have an idea).  We had to go back out in the waiting room again as they still didn't have any rooms.  We went back out to a packed waiting room.  The nurse  (who we didn't meet on our last visit) came out and got us and took us to a room.  She was very nice and was wonderful to Nicole.  The social worker came in and we talked about colleges etc.  The doctor than came in and talked to Nicole about how she was feeling etc.  I told him that I was concerned that when she was at the rheumatologist she had lab work done and it had come back with a low reading for her vitamin D which I guess they didn't find important to let me know nor did they fax the report to any of Nicole's doctors and I had to call them to fax it to me.  I had called the office to find out if I should give her a supplement and what dosage but I hadn't gotten a call back.  He decided that they were going to test her electrolytes, vitamin D, calcium and I think he said potassium. They believe she is low in vitamin D from not being in the sun enough and not from diet.    He also addressed the fact that Nicole's nose is red around the entrance to the nostril (which really wasn't red at all and I told them that it is usually worse).  They thought this was from the O2 but it only started happening when she began the Letairis.  I believe I read this was one of the side effects.  The dr. said he had never seen this side effect before.  Also, addressed the congestion which I guess she will have to live with at this point.   He had her walk around the clinic with the  dr. in training that was shadowing him when she was hooked to a pulse ox machine so he could see her numbers which were very low.  I guess I will be taking them during the day now when she walks and I will do them with and without O2.  I was a little disappointed because I want them to tell me that she's all better etc. and I know in reality this isn't going to happen unless Jesus heals her.
We then had to go to the lab which was full... fun.... we sat there for about 20 mins. until she was called.  Then we went and had lunch at Steak n' Shake and were on the road again.  We got home about 4:00 p.m.  The doctor said he wanted to see her every 3-4 months.

Tuesday, March 1, 2011

I am so blessed ...

I am so blessed to have the daughter that I do.  For those of you who may not know I have one child, a sixteen year old daughter.  Her name is Nicole.  She was diagnosed with a rare life-threatening disease a year ago at the age of fifteen. At this same time we also found out she was born with a heart defect that we didn't know she had.    To say that our lives have changed is an understatement.

I am so proud of her for having the courage that she does to go through this at such a young age.   She is an amazing young woman.  Nicole is homeschooled and we participate in a homeschool co-op on Mondays and she volunteers in the pre-K class room.  Yesterday, she was asked to draw an octopus on poster board for the class.  For those of you who may not know, Nicole, is an awesome artist and has had this talent since a very young age.  This is her passion.   She also helps with a learning games class for K-1.  For the past couple of weeks the teacher has asked Nicole to write a story for the class which Nicole has gladly done.  She will also draw the illustration.  I am so proud of her for this. The kids just absolutely love her.

Nicole has written an article than will be in the Pathlight magazine in the next issue.  For those of you who don't know the publication, it is a magazine put out by the Pulmonary Hypertension Association (this is the disease that she has).  I have read the article which Nicole will give her final approval of and I must say it brought me to tears.

Sometimes, I am too hard on Nicole and focus on the things that she doesn't do... no motivation to do her schoolwork, doesn't pick up after herself, must fight with her to get her out of bed, etc.  when I should really focus on her strengths and the influence she is having on others.

I hope that you will read this Nicole because I just want you to know how very proud I am of you and this goes for Daddy and the rest of the family.  You are a blessing and a joy in our lives and it doesn't matter if you are sick or not.  The happiest day of my life was the day you were born.  I will stand by you and support you in whatever God has in store for you and our family.  God didn't and doesn't make mistakes.

I will try and focus more on your strengths and the awesome gifts that you have instead on the fact that you don't pay attention in class, don't do all your work or don't put the effort into it that you should  etc. etc.  I want you to know that I'm always proud of you every single day and that you are my hero.