Week in Review - 1/20/14

I have a goal to write more here this year.  I am going to start with a week in review which I hope to write every Sunday evening just talking about the week we had with Nicole's PH journey.

Monday started out with me going to Walmart, Michaels and the Dollar Tree.  I love the dollar tree because everything is a buck.... period.  I have certain things I like to get there.  I then went to Michaels as it is in the same plaza with the dollar store.  I was looking for some stamping supplies as well as a couple of items for Nicole's drawing class for the new semester.  I had no luck with finding what I wasn't able to find through Blink.  The university only puts out the supply list two weeks before classes start.  As of tonight, I still haven't found one pencil and have to order the other online and the spring semester starts tomorrow.  I then went to Walmart because Nicole needed 1 1/2 yards of black, white and gray fabric for her drawing class... curious to see what this is for.  I also picked up a couple other things.  I had a Publix coupon for Yoplait yogurt buy one and get one free and it was a specific kind.  The cashier said they don't take those coupons which according to their coupon policy that take all competitor coupons.  A lady came over, I'm not sure what she was, but she took one look and said it's a Publix coupon we don't take it.  I was like fine... I will give them my business instead of you which would have worked better if I had told him I didn't want the yogurt but Nicole was out of it and so I got it.  The guy behind me in line was shooting me the evil eye.   Had lunch at Wendy's which was nice as I love their asiago bacon chicken sandwich.

When Nicole changed her pump about 4:30 p.m. the silhouette which has the catheter attached was starting to lift off her skin and she had some sores underneath.  She use to get these all the time for several months and we tweaked a bunch of stuff like changing the barrier wipe brand and letting the area dry more etc.  She would need to change the site soon as she was on day 28.

On Tuesday, Nicole had an appointment with her psychiatrist.  We were in and out of their quite fast which I was happy about and I am happy that it is literally five minutes from our house as opposed to the 20 - 30 minutes when we have to go into Orlando.

Nicole had decided that she would change her site today.  I know she would have probably pushed it to Wednesday but she wanted to go to lunch with me on Friday so she opted to do it today.  About two hours after she changed her site she started having pain and before the evening was over she was taking her pain medication.

Nicole also sent an email to the pre-transplant coordinator asking for another letter from their center stating why they were not listing her for transplant.  I had done a rough draft of it and she made it her own.  She also said that letters sent to other transplant centers with her records had not been included in the records that we had picked up and she wanted them emailed or faxed to her.  At the time of writing this we haven't heard from anybody at the center.

On Wednesday, Nicole was in a lot of pain and I always try to help her as much as possible by getting her ice packs, getting her water, making her lunch etc.  I always make brownie's for her also which is one of her favorite treats.  It is painful for her to get up and walk as her infusion site is in her thigh.  We spent the day at home.  Monday, Wednesday and Fridays are the days that we are usually home and I can get a lot accomplished around the house if I don't let the computer etc. distract me.

This day marked the four year anniversary of Nicole's diagnosis.  Nicole didn't mention it at all but I know she didn't forget.  It is a very difficult day for all of us.  It is sad to say but it is getting harder and harder to remember "our normal life" prior to that.

Normally on Thursday Nicole would go to rehab at the hospital but after a site change she can't go for about a week to ten days.  I was spending a lot of time this week working on my speech I would be giving tonight at our PH support group meeting on  how I keep Nicole's medical records/issues organized.   I also had to get all the stuff together for the meeting.  I was taking a whole bunch of 1 " binders and spiral notebooks that I had accumulated, hopefully, for people to take home.  I was so grateful that a person who comes with one our members works at a school and took what was left behind to give out to the students that didn't have binders.  I am going to give her some more also as I have a ton of them. Nicole wasn't able to go to the meeting as she was in too much pain and was  more comfortable at home.

Friday started with me calling  Accredo, the speciality pharmacy to re-order two of Nicole's PH medication (her Remodulin is one of them)  this call always takes about 30 minutes.  I always call when I open the last vial of Remodulin and I was going to be doing that on this day.

I was getting Nicole up when she takes her morning meds at 10:15 for our lunch date with Kathy who was coming by at 11:00 a.m.  Nicole was going to tough it out and go because she wanted to see Kathy and she wanted to go to Olive Garden which is her favorite restaurant.

We had a wonderful lunch.  My father-in-law had given Nicole this cane called the hurry cane which has like a claw on the bottom to keep it from falling over and giving the person more stability.  Since Nicole's infusion site is in her thigh she will limp pretty good (until her pain is gone) and putting her weight on her leg makes it hurt.  She used the cane for the first time and did a wonderful job with it.

It breaks my heart because I know how much she hates it when she knows people are staring at her.  She is walking with a cane in her left hand and pulling her oxygen concentrator with her right.  I know she sees the looks of people.  I don't understand  why it is no big deal to see an older person walking with a cane on oxygen.  I guess because it isn't normal to see a young person or child like this people have to stare.   I have been very close a couple of times of asking somebody if they had something they wanted to ask about my daughter because they kept staring at her but I refrained myself so I wouldn't embarrass Nicole.

Nicole enjoyed her lunch even though she was in pain and had to take a pain pill while we were at the restaurant.  She didn't eat much of her lunch because she filled up on soup and breadsticks.  That's okay we came home with another meal of left overs :).

Weekends are not very structured.  I go shopping at Target and Publix and sometimes I will hit Staples as they are all together in the same plaza.  I always enjoy spending this time with my mother-in-law.  We have gone shopping on Saturday mornings since 1995 so she could spend some time with Nicole who came with me until she was about 12 years old or so.  I really don't do much housework on weekends either.

On Saturday nights I go out to Denny's (usually) with my bff, Margaret, and hang out for a couple hours.  We usually go to Aldi or the dollar store across the street from Denny's.  This is always something that I look forward to so much and is a great stress reliever.

Today is Sunday and I spend time planning out my week of what I want to accomplish as far as organizing, decluttering and personal accomplishments as well as what appointments and other commitments do we have this week.   Rick and I went to Home Depot to get some potting soil and I found a peppermint plant .... woohoo... I also went into Staples looking for the annual monthly/weekly calendar refill for the Arc planner but they didn't have it.  I did get a couple of the uni-ball pink signa gel pens... I love them and they are only 50 cents.

I made a great dinner of white chili and cornbread.  I filled Nicole's medications for the week in her daily pill boxes and I also filled her vitamins in her weekly pill box.  I was mad at myself that I didn't have enough Zyrtec for the week and I had thought I had another bottle.  I usually make a point to buy another bottle of something when I open the last one but it slipped through the cracks.  I will have to stop by Walgreens on Tuesday after Nicole's counseling appointment and get some Zyrtec.  I also am low on some of her vitamins which I will have to get either at Publix (if on sale) or Target.  I really would like to get a better system for keeping track of  refilling her medications and her vitamins.

I asked Nicole tonight at dinner if she was excited to be starting school tomorrow and she said yes.  I will have to call the local art store tomorrow and see if they have the items that I am looking for and if so, have Rick pick them up on his way home from work as he goes right past it.

I am hoping and praying for a good week that is sickness free for all of us but especially for Nicole.  Last night some kid was standing up in the booth and started coughing right behind me.  Obviously, his mother hasn't taught him to cover his mouth.   I worry so much and am so paranoid especially this time of year.

January 22, 2010

This post is part of the #Blog4Care blog carnival being hosted by Caring Across Generations. We're hoping that by sharing our caregiving stories, we can begin to come up with solutions to the care crisis that is affecting millions of Americans.

Four years ago today we took Nicole to a cardiologist due to low oxygen saturation levels.  I never, ever thought that we would hear that she had been born with a major heart defect.  We were told that she had a large (2.8 cm) hole (along with several other smaller ones) in the lower chamber of the heart this is called a ventricular septal defect (VSD).  She also had a patent foramen ovale (PFO) that is like a intermittent flap in the atrium (top part of the heart).  Sometimes it is also called an atrial septal defect (ASD).  Due to the lack of diagnosis of these two heart defects she developed Eisenmenger's syndrome (reverse shunting of the heart) and severe pulmonary hypertension.

I remember sitting in the office like it was yesterday after being told all of this.  It is like being kicked in the chest and you can't get any air.   We had believed that Nicole was healthy up to this point even though she was always sick, didn't gain weight, had anxiety issues, etc. etc.  It was also a blow to the future... everything you want for your child evaporated that day.  I don't think it was this initial visit but it was shortly after anyway that we were told she would never be able to get pregnant and have a child of her own.  She would also need at least a lung transplant with her heart issues being up in the air as to repair/transplant.

I remember coming home and googling pulmonary hypertension.... bad mistake... what I found literally scared the shit out of me (excuse my language) and I literally had nightmares.  It was six months before I would find PHA (Pulmonary Hypertension Association).

It would be a lie to say that this has been an easy journey.  For  the first two years at least I would wake up every morning thinking this was all a nightmare until I realized it wasn't a nightmare with the humming of the oxygen concentrator.  Now I just wake up and ask what day is it today and what do we have to do.

If you are a caregiver, you know the stress that comes with this.  If you are a caregiver and a parent to a chronically ill child that is also incurable  I think that adds a little bit more stress.  I have constant worry about Nicole.  If I go shopping etc. and leave her home alone I worry about her and pray that she is okay.  I worry about her future and that she will mentally, physically, and emotionally be able to come to terms with this as best as she can.  Every morning as soon as I get up I peak into her room and watch her to make sure she is still breathing.  I have tried very hard the past few months to not do this but even as I sit here writing this the urge to go check on her is so strong and it probably would cause me a lot less anxiety if I just went and checked on her.  The worry never, ever stops with this disease that can take a turn for the worse at any moment.  This time of year is worst because of flu season.  I was out having coffee with my friend the other night and one of the waiters went past our table and said hi and grabbed my hand and I immediately used hand sanitizer.  Even though Nicole and I both have had our flu shots if Nicole was to get the flu she would have an immediate pass to the hospital and quite frankly any type of respiratory infection could be deadly for her.  I pray everyday that she won't be  running a fever  etc.

I'm not sure if I will ever fully come to terms with this.  This isn't where I saw my life or Nicole's life four years ago.  I have come to terms with the fact that she was born with a congenital heart defect  as it is the number one  birth defect which, unfortunately, I didn't know in 1994.  I blame myself in a lot of ways because I didn't listen to my gut and my instinct and just "trusted" the doctors who all said she was perfectly healthy.  How do you come to terms with your daughter's whole life being a lie so to speak?

I have come a long way with the anger and negative emotions I have toward the pediatrician that Nicole had until she was four years old and the doctor who read her EKG wrong when she was six and even the pulmonologist that misdiagnosed her with asthma at seven years old.  Will I ever truly get passed it... I don't think so... I do the best that I can though because no matter how much I fight it and try to rationalize it the facts will not change.  Nicole fights everyday just to breathe and I find everyday for awareness of a disease that has taken so many lives that people have never heard of just like I had never heard of it.

Even though the last four years have been hard and this is just from my perspective and I know it is much, much harder for Nicole to actually have to live it.  There have been many, many blessings along the way.  We have met some awesome people and have made some awesome friends that we would never have had the chance to meet if it wasn't for Nicole's illness.  I truly believe that God gave Nicole her gift as an artist to compensate for her not being able to run and play and jump like other children. We have also had to learn along the way who are true friends really are because when you have a crisis of any kind people tend to scatter.

I have learned that I can hopefully use my big mouth for good and to help others with this disease or to raise awareness for pulmonary hypertension, for congenital heart defects and having newborns tested for them, and for the importance of organ donation  and to be an advocate for Nicole.

I will always speak out to raise awareness for PH as well as other rare diseases that don't get any recognition.  I will always, always be here for Nicole as long as there is breath in my body and I will always speak on her behalf and be an advocate for her.   I will always (or at least do my very, very best) to keep the faith and to have hope that one day there will be a cure for this disease and Nicole will be healthy.  I ultimately know that even though the doctor's hold her life in their hands in a lot of ways her fate is up to God and nobody else.  God has a great future planned for Nicole whether she struggles everyday with a debilitating lung disease or whether she is healthy.

I am so proud of the young lady Nicole has become and how she has dealt with these issues for the last four years.  She is an inspiration to me everyday and I have learned so many things from her.  She is the greatest love of my life.

My deepest wish (other than a cure) is for Nicole to realize just how special she is ... just how much courage she has... just how strong she is.  I wish that she wouldn't allow other people to tell her what they feel is  wrong with her and what she doesn't do right through their eyes.  She will never truly be happy until she starts living for herself and not through what others think of her.  I know as I struggle with this too... that this is a very hard lesson to learn.

My Three (Well, Maybe Five) Goals for 2014

Happy New Year!

On January 1st a lot of people make resolutions each year and very few actually follow through with them.  I stopped making resolutions years ago.

I do make goals though and do try to follow through on them.  My major goal for 2013 was to get my house decluttered (most specifically my living room which is the dump room as it isn't really used) decluttered.  I did not accomplish this goal :(  .  I am disappointed in myself and don't know how I couldn't get this achieved within twelve months.  I did make major strides toward this but I wasn't consistent enough.  I didn't realize how much stuff I have accumulated through procrastination and overspending.  I learned a lot through many different organizational experts.   I have to learn to be brutal when it comes to what I should keep and what I should let go off.

My goals for 2014 are only through March 1st at this point.  I will continue to make goals from March 1st - May 1st in the meantime.  I will only choose three things (or try) to focus on.  I think this was a problem last year because I had too many goals and they were not specific enough.

My first goal is to lose 10 lbs. before March 1st.  I did weigh myself this morning but I still need to do measurements (yuck....) .  The way I will achieve this is:

*  start exercising three days per week and try to be more active through housework  and not spend so much time at my desk unless I have a specific purpose other than reading emails and/or facebook.

*  watch my chocolate and sweet intake.  This I will need to accomplish by not bringing it into the house and leaving it at the store.  For instance, I have a love for Reese's peanut butter cups so I will buy a king size one at the checkout when I grocery shop and eat two on Saturday and two on Sunday.  This I am okay with I just can't bring in bags of candy.  I can still bring in sweets for Nicole and Rick but it will be those things that I have self-control over and I know what this stuff is.

*   I will also watch my portion control and only go by the serving size.  I have cut back a lot on bread (or I had until the holiday season) and want to get back into only having bread once or twice a week at the most.

* I also want to focus on drinking more water.

My second goal is getting my living room totally done by March 1st.  I broke this down into zones and what their  purpose is.  For instance, we have two wall bookcases and one is for books the other is for photo boxes, binders, cook books, journals etc.  (this is the purpose for it).

I also have the purpose for the two trunks I have in there and the craft area as well as the foyer off the living room.  The only area I didn't do was the fireplace mantel which I will need to find a purpose for but not sure what that is yet.   I guess it could just be clean except for some fake flowers or a plant.

The third goal is something I heard from Ellen Rogin about not making all your goals things to do (lose weight, declutter, jump out of an airplane etc.) but also on emotions so the first word that came to me when I heard her say this was peace so my goal to March 1st is to read at least one book on peace which I have already picked out by Joyce Meyer and write the scriptures on peace in the concordances of several different Bibles (amplied, NIV, KJV etc.).

The fourth goal ( I know I only said three) is to save enough money prior to March 1st to get a new iPhone.  I don't want a contract for my cell phone and Straight Talk is great and much cheaper.  Even though I only got the phone last year (2012) for Christmas it is a 3GS and came out in 2009 so I really do need to upgrade.   I also would like to save $200 in savings by March 1st.  I will also have a consistent habit of keeping track of my spending both for  our family and for Nicole (since I am her representative  payee of her SSI and am accountable for what she spends).  This will include consistently sticking to a budget....

My fifth goal stems from a free scholarship that I won for a Nutritional Healing Class along with a couple of other classes regarding naturopathic healing.  I want to complete this first class by consistently spending at least 30 minutes five days a week working on it.  I will need to schedule this into my calendar just like exercising and decluttering.

I know I should have only listed three goals but these all weigh heavy on my heart.  I would like to think that each one is realistic and I will be able to achieve them.

I know by recording my goals in a specific notebook (which also has a specific home) and writing this blog I will have these goals in front of me and will not forget them or misplace them.

I would also like to work on being more diligent with keeping up with Nicole's medical notes and paperwork and not let it pile up.  I will be happy to make a habit of filing all medical related paperwork at least one day every two weeks (which I will put in my tickler system so I don't forget and it can be planned).   I also want to consistently keep updated in Evernote with daily happenings with Nicole's medical issues such as phone calls, appointments etc.

I have so many things that I want to work on and improve and I want to do them all at once when I know I can't do this and it is unrealistic.