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.
Sunday, January 26, 2014
Wednesday, January 22, 2014
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.
Wednesday, January 1, 2014
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.
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.
Monday, December 23, 2013
Update ...
It has been awhile since I have written on here which one of my goals for 2014 will be to be more consistent with my writings. A lot of things have gone on with Nicole’s care in the last couple of months. Just a brief recap for those who don't know me or are coming here for the first time. I care for my 19 year old daughter, Nicole, she has a laundry list of health issues starting with generalized anxiety disorder, obsessive compulsive disorder, benign hypermobility joint syndrome (which is basically loose joints that cause joint pain), idiopathic thrombocytopenic purpura (ITP) which is a bleeding disorder that is caused by a low platelet count, she also has several holes in her heart which she was born with but went undiagnosed until she was 15 years old which caused Eisenmengers Syndrome (reverses shunting of the heart the blue blood which is oxygen poor is going to her lungs instead of extremities) and pulmonary hypertension (PH) which is high blood pressure in the lungs which causes the arteries in the lungs to close up. The PH is progressive and will eventually lead to a lung/heart transplant.
Nicole has been a patient at the transplant center near our home for the past year. In Feb., it was determined after many tests that she would need a lung/heart transplant as opposed to a lung/heart repair. Her heart is repairable but not unless it is at the same time as a transplant and it would take to long. Every three months Nicole would be seen and have routine tests to make sure that she isn’t declining.
At the end of August Nicole went to the transplant center for a three month visit. The doctor didn’t like the results of one of the tests that she took. He thought that maybe her Remodulin (continuous medication that she receives through a catheter in her skin) was the culprit and the dose was too high. This led to a visit with the PH specialist for his opinion and he absolutely did not believe that her dose was too high (if anything, he thought it probably needed to be increased) and didn’t believe that Nicole was declining.
At the beginning of October Nicole saw her congenital heart defect cardiologist for her six month visit. At this time he stepped down as her doctor (his partner had been the one that diagnosed Nicole in 2010). He sited the reasons as lack of communication from her doctors. Nicole sees a psychiatrist, a hematologist, a rheumatologist, a gynecologist, a PH specialist in addition to the transplant center and the only correspondence he had received between April and October was from the gynecologist. He also does not agree with the recommendation of the transplant center that Nicole needs a lung/heart transplant. He believes she can have a lung transplant with heart repair. I was very upset by this and I let both the PH specialist and the transplant center know this. I had a lengthly phone conversation with the PH specialist and Nicole was seen at the transplant center at the end of October to discuss another cardiologist. The transplant center didn’t want us to find another cardiologist and wanted Nicole to see the cardiologist at their center. Nicole was fine with this. On November 11th we saw the new cardiologist. The appointment didn’t start well when the doctor walked in and asked about a second opinion which I had asked for back in March but we never followed through because Nicole decided she didn’t want to do this. We told the doctor again that Nicole didn’t want to go ahead with a second opinion and she was comfortable with their recommendation. He said that she would probably have to go out of state as they didn’t do heart/lung transplants at the center. Once I picked myself up off the floor, I asked why after a year are we just finding this out? Of course, there was no explanation for this. After this appointment I sent an email to the lung doctor at the transplant center (who we have seen every time we go there) asking him the same question that I asked the cardiologist. I also sent another email to the PH specialist letting him know what was going on. I didn’t hear anything for two weeks from the transplant center until the day before Nicole was suppose to get a test done that they had set up to cancel the test until the doctor could be present. I said in light of the last appointment she wasn’t doing any testing until we had some answers. It was our understanding that they were referring us to another center so Nicole wasn't a patient there anymore.
The following week right before Thanksgiving we were called with an appointment for Dec 18th to see the doctor at the transplant center. We saw her PH specialist on the 17th and had an idea of the “issues” that the transplant center had so we didn’t go to the appointment totally in the dark. The first thing that didn’t go right was the fact the appointment was at 11:00 and we didn’t see the doctor until 12:45 p.m. The second thing that didn’t go right was he refused to allow me to tape the appointment even though I have asked in the past and he has allowed it. The PH specialist had told me that the transplant center had said we had misinterpreted what the cardiologist had said so my question was “how do you misinterpret we don’t do heart/lung transplants at this center?” Of course, I still didn’t get an answer other than “I understand were you might think that.” He contradicted what the cardiologist said and told us that they did do heart/lung at the center. Another issue was that he wanted to see more of Nicole and less of me. This is fine… but I will not just sit back and let a doctor tell us what to do and do it without knowing why it needs to be done etc. because as I told the doctor… “at the end of the day I was the only one who truly has her best interests at heart.” I also told him that just because I called him on things and questioned things do not take that out on Nicole. The transplant center now wants us to get a second opinion and even if I hadn't asked for one they would have... this was never expressed to us before. The doctor also was uncomfortable with Nicole and didn’t think that she was “emotionally ready for transplant” based on her visits and didn’t believe that she would be compliant with taking her medication and doing the tests required after transplant. Nicole has never given him any reason to believe this. She takes her medication every day and has done all the testing that they have requested.
There is also the issue of insurance… Nicole has Medicaid because she is on disability and it turns out that the transplant center doesn’t have authorization to do transplants for Medicaid patients something we were never told. The doctor also has a concern about her low platelet count but he had never brought it up before and he has seen her lab work.
I only wish that I had known about all of this issues prior to now so we could have avoided all of this crap. Back in August, Nicole had questioned him about a right heart cath he wanted her to have to see if she was indeed declining and then to decrease her medication and then three months later have another one. He took this questioning of hers as non-compliance just like us not getting a second opinion. The PH specialist had said that he has told the transplant center in no uncertain terms that it was not an option for Nicole not to be listed and he said “I don’t recall him ever saying this.” The PH specialist also said he had pressed him for things that Nicole could do to make this situation better which I questioned him about to and he refused to give us any concrete examples and kept side-stepping any questions that Rick, Nicole or I had.
Needless to say, we walked out of there with our heads spinning. The following day I called University of Florida and scheduled an appointment at their transplant center for a consult. I only wish that Nicole could get in before the end of Feb. 2014. I will pray that she stays healthy and stable until this time. I was also very troubled to hear the transplant center say that out of a hundred patients that come to them they will only accept 10 of them for transplants.
It saddens me that this center has put Nicole and the rest of our family through a year of waiting and believing that they were the ones that were going to give her a new lease on life. They have done nothing but deceive us by not telling us things that we should have been told. I can't help but feel that it is partly my fault as I have questioned a lot of things and have been very vocal about her losing her cardiologist as well as the lack of communication between doctors. It is hard for me to understand how they can believe that Nicole will be non-compliant when they see her every three months for 20 minutes or so nor have they made any attempt to get to know her as the doctor tried to state that he has.
We have no idea what Nicole's current status at the transplant center is at this time. The nurse was suppose to email me some letters from other centers and I have yet to receive this. I feel bad that Nicole has to go through this because it is all about her .... this is her life and her health that is at stake.
Thursday, October 24, 2013
Random Thoughts
I'm not sure that this will be in any random order as my thoughts are so scattered with all the things happening with Nicole and her illness and also just with life in general.
The last time Nicole saw her PH specialist he referred us to an adult hematologist to try and get some answers as to why her platelet count is consistently low and also her anemia issues even though she takes iron. The hematologist did diagnosis her with ITP which is Idiopathic Thrombocytopenia Purpura. Basically, this is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Usually people with this have too few platelets in the blood. There's either chronic or drug-induced... the doctor seems to think that Nicole's is drug-induced, I disagree, and while I am not a doctor, I do know Nicole better than they do. Her platelet count was low at the date of diagnosis prior to medications which I absolutely believe have also contributed. The doctor feels that having a bone marrow biopsy will help them in seeing how her bone marrow functions and whether the problem lies in the production of platelets or whether the problems lies after the bone marrow has spit them out.
This was a complicated decision to make as to whether to actually put Nicole through this painful test. One she has to be sedated (anxiety mostly) and this is extremely dangerous for a PH patient and secondly I don't want her to go through unnecessary testing and the final reason is one of her doctor's doesn't agree with having this test done.
Earlier this month, Nicole's cardiologist, who specializes in congenital heart defects and whose office diagnosed her CHD and PH in 2010 stepped down as her doctor for a number of reasons from lack of communication between the doctor's to not agreeing with the treatment plan for transplant etc. This was a very stressful situation. I will do whatever I can to make sure doctors have better communication. There is no reason that if a doctor is cc'd that they are not getting it isn't getting it. As one of Nicole's doctor said they would probably have better communication if they were on facebook and did so.
There were a lot of issues that needed to be addressed in regards to the bone marrow which didn't get addressed to my satisfaction so the procedure was cancelled at the last minute. It has been rescheduled for next week and while I do feel better I still worry because most doctors do not have a clue about PH and how they are different when it comes to sedation. I know she can have the procedure without sedation but I don't think her anxiety will allow this. She was/is terrified of having this test which shows up for Nicole with major stomach issues.
After Nicole's doctor stepped down I wrote an email to both her PH doctor and the transplant center basically letting them know of my displeasure over this whole issue. Nicole had an appointment yesterday at the transplant center. I am still trying to process and haven't listened to the recording of the appointment but the jest of it was.... we have to make a decision as to how to proceed. The center has determined that Nicole needs a lung/heart transplant as opposed to a lung/heart repair. If we decide to go to Mayo or University of Florida for a second opinion and they say they can do a lung/heart repair this center will not change their mind. Tampa will not see Nicole because they do not do lung/heart. The question is to we want to travel several hours away to have all the testing done again that she has already gone through to get a second opinion regardless of what that is. We know enough about transplant and the odds of living 10 years after a heart/lung are 35% but the chances that Nicole will be alive in 10 years with her illness now (PH) is less than that.
My hope with the appointment yesterday was that we would get a recommendation for another pediatric cardiologist (she has to see pediatrics because they specialize in congenital heart defects). I didn't get this. Basically, we were told if we decide to stay with this transplant center and proceed with transplant at the appropriate time that we don't need to replace the cardiologist. I'm not sure I am comfortable with this. The doctor basically said "well the PH specialist is a cardiologist... yes, this is true.... but he has no knowledge of CHD's as this isn't his specialty and he is an adult cardiologist. The transplant doctor said that they have a cardiologist there and he wants us to see him (we haven't before). So basically, the bottom line is we would see the doctor's at the transplant center and the PH specialist and that would be it outside of her rheumatologist, hematologist, ob-gyn, primary, and her psychiatrist.
I guess at this point we will see the cardiologist and see what he says. I will wait until after this time to really think about this. My main goal for the next week is the bone marrow biopsy which her PH specialist wants her to have. We spoke on the phone at great length about this. I would just feel a lot better if someone was there who was knowledgeable with PH like the doctor or his nurse etc. but since the specialist is at a different hospital than the procedure this won't happen. I have the name of the doctor (who I have never heard of) doing the procedure but I don't know yet who the anesthesiologist is at this point as on Wednesday when the appointment was made the lady who I have dealt with through this whole ordeal didn't have the schedule. I'm sure aneshesiologist doesn't have a clue. I asked if they had knowledge of PH but she said she could only assume that they did... not... this isn't a good thing (to assume). This is the first time in almost four years since Nicole's diagnosis that she will have a procedure that requires sedation (she gets the same sedation every time to my knowledge) that her PH doctor hasn't done it/been present, his nurse hasn't been present, or the same doctor/anesthesiologist hasn't done the procedure. This makes me so nervous and I would feel much, much better if there was a nurse or somebody present who was knowledgeable.
The stress and anxiety this puts on our family is tremendous when I spend every moment of every day worrying about Nicole and her future as well as our future as a family. It is exhausting with the phone calls, doctor appointments etc. It is exhausting feeling like a total bitch because I have to ask 101 questions for everything and if I forget anything the consequences could be bad. It is exhausting trying to fight a system that clearly doesn't work well when doctors and hospitals can't communicate especially in this day and age with electronic every thing from iPhone's to mini computer's. Does me running my mouth trying to raise awareness about anything pertaining to Nicole and her illness do any good at the end of the day?
I guess my biggest question/concern is why does a 19 year old young lady have to make such life-changing decisions when she should be out having fun with friends, a boyfriend and looking forward to a future? Instead, she has to make a decision as to whether or not she should have a lung/heart transplant, get a second opinion about that, and all the other decisions that need to be made in context to her health. The future for her is so uncertain and while in reality it is for all of us because none of us know if we have a future or what is in store but for Nicole this hits hard. The decisions that Nicole has to process would be hard for a mature adult let alone a teenager. I will help her and support her with any decisions/issues pertaining to her health and I will be with her every step of the way on this journey no matter what her/our future holds.
The last time Nicole saw her PH specialist he referred us to an adult hematologist to try and get some answers as to why her platelet count is consistently low and also her anemia issues even though she takes iron. The hematologist did diagnosis her with ITP which is Idiopathic Thrombocytopenia Purpura. Basically, this is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Usually people with this have too few platelets in the blood. There's either chronic or drug-induced... the doctor seems to think that Nicole's is drug-induced, I disagree, and while I am not a doctor, I do know Nicole better than they do. Her platelet count was low at the date of diagnosis prior to medications which I absolutely believe have also contributed. The doctor feels that having a bone marrow biopsy will help them in seeing how her bone marrow functions and whether the problem lies in the production of platelets or whether the problems lies after the bone marrow has spit them out.
This was a complicated decision to make as to whether to actually put Nicole through this painful test. One she has to be sedated (anxiety mostly) and this is extremely dangerous for a PH patient and secondly I don't want her to go through unnecessary testing and the final reason is one of her doctor's doesn't agree with having this test done.
Earlier this month, Nicole's cardiologist, who specializes in congenital heart defects and whose office diagnosed her CHD and PH in 2010 stepped down as her doctor for a number of reasons from lack of communication between the doctor's to not agreeing with the treatment plan for transplant etc. This was a very stressful situation. I will do whatever I can to make sure doctors have better communication. There is no reason that if a doctor is cc'd that they are not getting it isn't getting it. As one of Nicole's doctor said they would probably have better communication if they were on facebook and did so.
There were a lot of issues that needed to be addressed in regards to the bone marrow which didn't get addressed to my satisfaction so the procedure was cancelled at the last minute. It has been rescheduled for next week and while I do feel better I still worry because most doctors do not have a clue about PH and how they are different when it comes to sedation. I know she can have the procedure without sedation but I don't think her anxiety will allow this. She was/is terrified of having this test which shows up for Nicole with major stomach issues.
After Nicole's doctor stepped down I wrote an email to both her PH doctor and the transplant center basically letting them know of my displeasure over this whole issue. Nicole had an appointment yesterday at the transplant center. I am still trying to process and haven't listened to the recording of the appointment but the jest of it was.... we have to make a decision as to how to proceed. The center has determined that Nicole needs a lung/heart transplant as opposed to a lung/heart repair. If we decide to go to Mayo or University of Florida for a second opinion and they say they can do a lung/heart repair this center will not change their mind. Tampa will not see Nicole because they do not do lung/heart. The question is to we want to travel several hours away to have all the testing done again that she has already gone through to get a second opinion regardless of what that is. We know enough about transplant and the odds of living 10 years after a heart/lung are 35% but the chances that Nicole will be alive in 10 years with her illness now (PH) is less than that.
My hope with the appointment yesterday was that we would get a recommendation for another pediatric cardiologist (she has to see pediatrics because they specialize in congenital heart defects). I didn't get this. Basically, we were told if we decide to stay with this transplant center and proceed with transplant at the appropriate time that we don't need to replace the cardiologist. I'm not sure I am comfortable with this. The doctor basically said "well the PH specialist is a cardiologist... yes, this is true.... but he has no knowledge of CHD's as this isn't his specialty and he is an adult cardiologist. The transplant doctor said that they have a cardiologist there and he wants us to see him (we haven't before). So basically, the bottom line is we would see the doctor's at the transplant center and the PH specialist and that would be it outside of her rheumatologist, hematologist, ob-gyn, primary, and her psychiatrist.
I guess at this point we will see the cardiologist and see what he says. I will wait until after this time to really think about this. My main goal for the next week is the bone marrow biopsy which her PH specialist wants her to have. We spoke on the phone at great length about this. I would just feel a lot better if someone was there who was knowledgeable with PH like the doctor or his nurse etc. but since the specialist is at a different hospital than the procedure this won't happen. I have the name of the doctor (who I have never heard of) doing the procedure but I don't know yet who the anesthesiologist is at this point as on Wednesday when the appointment was made the lady who I have dealt with through this whole ordeal didn't have the schedule. I'm sure aneshesiologist doesn't have a clue. I asked if they had knowledge of PH but she said she could only assume that they did... not... this isn't a good thing (to assume). This is the first time in almost four years since Nicole's diagnosis that she will have a procedure that requires sedation (she gets the same sedation every time to my knowledge) that her PH doctor hasn't done it/been present, his nurse hasn't been present, or the same doctor/anesthesiologist hasn't done the procedure. This makes me so nervous and I would feel much, much better if there was a nurse or somebody present who was knowledgeable.
The stress and anxiety this puts on our family is tremendous when I spend every moment of every day worrying about Nicole and her future as well as our future as a family. It is exhausting with the phone calls, doctor appointments etc. It is exhausting feeling like a total bitch because I have to ask 101 questions for everything and if I forget anything the consequences could be bad. It is exhausting trying to fight a system that clearly doesn't work well when doctors and hospitals can't communicate especially in this day and age with electronic every thing from iPhone's to mini computer's. Does me running my mouth trying to raise awareness about anything pertaining to Nicole and her illness do any good at the end of the day?
I guess my biggest question/concern is why does a 19 year old young lady have to make such life-changing decisions when she should be out having fun with friends, a boyfriend and looking forward to a future? Instead, she has to make a decision as to whether or not she should have a lung/heart transplant, get a second opinion about that, and all the other decisions that need to be made in context to her health. The future for her is so uncertain and while in reality it is for all of us because none of us know if we have a future or what is in store but for Nicole this hits hard. The decisions that Nicole has to process would be hard for a mature adult let alone a teenager. I will help her and support her with any decisions/issues pertaining to her health and I will be with her every step of the way on this journey no matter what her/our future holds.
Friday, September 6, 2013
Emotions...
Today is one of those days when a slap in the face from a test or a doctor's appointment can really throw me into a tailspin.
I am forced to deal with emotions that I don't know how to deal with. I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis. A diagnosis that we should have found out years before we did.
For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications, etc. Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life.
It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare. I also check to make sure Nicole is still breathing and then I say a prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen. It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc.
I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that. We have had many blessings also to go along with the hell we have experienced.
I looked back over the last three years and know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far. I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant. I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good? I know I am not the only mom who goes through this with sick children I am sure we all do. For me, I don't know how to do this every day and stay positive, not be bitter, resentful, angry at doctors/God/myself etc. I do make sure I journal three positives from the day every night and so far today I only have a great parking spot up front at Walmart. Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is.
My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away. I am blessed that she is stable for the most part and that things could be so much worse. I am still able to give her a hug and tell her how much I love her.
I am forced to deal with emotions that I don't know how to deal with. I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis. A diagnosis that we should have found out years before we did.
For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications, etc. Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life.
It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare. I also check to make sure Nicole is still breathing and then I say a prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen. It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc.
I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that. We have had many blessings also to go along with the hell we have experienced.
I looked back over the last three years and know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far. I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant. I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good? I know I am not the only mom who goes through this with sick children I am sure we all do. For me, I don't know how to do this every day and stay positive, not be bitter, resentful, angry at doctors/God/myself etc. I do make sure I journal three positives from the day every night and so far today I only have a great parking spot up front at Walmart. Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is.
My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away. I am blessed that she is stable for the most part and that things could be so much worse. I am still able to give her a hug and tell her how much I love her.
Wednesday, September 4, 2013
Transitions ....
I was interviewed via video chat on Google hangouts on Friday, August 30th by Denise Brown at caregiving.com which is a blog site for family caregivers. I have been involved in this community for 2 1/2 years. It has been a godsend for me and I am grateful every single day for Denise and the other friends that I have made through the site. They have helped me more than words can express.
The interview was about transitions with Nicole and her starting online college classes on Sept. 5th. First, I am grateful that she isn't actually going off to college and I still have her living with us so that is a little better. I didn't think that I would have this emptiness when my homeschooling duties were over I thought I would only have relief but two months into what would be our school year I realize that I really do miss it and wonder how do I fill this gap.
Life for Nicole and our family is different for a family with a healthy child who is going to college. There are a lot of other responsibilities. I am responsible for Nicole's medical issues as her power of attorney because she is 18 and considered an adult so in order for her not to have all those burdens Nicole had to give me this authority. I am also responsible for her financial matters and her representative payee for her disability checks which I have to be accountable for. I think of myself as Nicole secretary or administrative assistant. I know what she expects from me and I try very hard to respect those boundaries. I do not ask her (or try not too... this is a work in progress) if she needs help with something... if she does... she must ask for it. I know this is hard for her because she doesn't want to depend on me and have to ask others to help her.
I always feel the need that I must explain myself as to why I am so overprotective of Nicole even though she will be 19 in less than three weeks (wow... where does the time go?) It is hard for people to understand if they don't have experience with this situation. How much should I still push Nicole? I ask this question with college... she had orientation last week and I was so proud that she had finished it and scheduled a conference call with one of her instructors (she's taking two classes). I didn't know she had scheduled this until the phone rang and I saw Nicole on the phone. I mouthed to her to let the instructor know about her medical issues. She didn't need to go into detail only that it had a potential to influence her schoolwork. After the call I asked her if she told the teacher and she said "no" because the call was being recorded for the other students. She said she would PM the teacher. This was last Thursday. I asked her last night if she had done this and she said "no". She also has an assignment that is due prior to tomorrow.... she either had to make her weekly schedule or take a picture of her desk/work space. She didn't want to do her weekly schedule, this would allow her classmates to know she is ill. I don't understand why she feels compelled to keep this a secret or is ashamed of this but I have to respect this. She also thinks her life is boring. She decided that she was going to take a picture of her desk area. The problem is her desk was a mess. She asked me to help her get it organized which of course I said I would do. I make her take everything off her desk but her computer. I have asked her numerous times what she needs on her desk and she says she doesn't know. I am a little upset that she asks me to help her but when I do try she blows me off... I guess this is my problem... As of last night she still hasn't completed this assignment. The way her classes work is she has a module to complete in each class every week which runs from Monday to Sunday. The modules consist of reading, an assignment of some type and then a discussion. I need to find a balance of not hovering but still knowing that she is getting the work done without her getting behind or overwhelmed. I thought this morning as I was thinking about this blog that I would touch base with her on Friday's to see what her assignment was and if she has completed what needed to be done. If not, I have Saturday to make sure she gets it done. The rest of the time I will need to step back unless she comes to me. This will be very hard for me to do.
Ever since Nicole graduated I feel like I am just floated a long with no place to go so to speak. I have devoted so much time to Nicole's schooling and her medical issues that I haven't had much time to focus on myself and what I want for myself. I know even with Nicole's illness that within a few years she will want to be on her own and move on with her life. I need to have something that fulfills me. Yes, I have goals like to declutter and organize my house which I have been working on. I would also like to shed some pounds and get into a healthier lifestyle. I would like to continue to learn about pharmacology and at some point get certified as a pharmacy tech but I don't think that I can work outside of the home and still focus on Nicole's medical issues at this point in time. I do try to save money where ever possible and make a few bucks here and there when the opportunity arises. I would love to find something from home for a more consistent income. I want to continue to learn and grow into the person I know I can be. I have been very interested in herbs and herbal/homeopathic medicine for quite a few years and would like to learn more about this and how it applies to keeping Rick and I healthier. I would also like to learn how nutrition can be a benefit to Nicole and her health. I would also like to takes some self-help classes that pertain to organization/decluttering. I still don't feel like I have a clear picture of this though. I would also like to improve my relationship with God and really learn to trust him with Nicole and her health issues and trust that whatever happens that it is for the best. I can't spend my days wondering why she has had to go through what she has and why we had to wait so long for a diagnosis. I want to be more true to myself... be more like Jesus and love others more than I do... be a light and inspiration for Nicole, Rick and the rest of my family and just forget about what others think. I want to be at peace within myself when it comes to Nicole's health and the journey that we are on with this even though this isn't the life I had hoped for Nicole or our family. I want to help others who live with the disease or any other illness that impacts a persons life. I also want to be support for other caregivers. I feel like this is too much to want and how do I go about getting this all. It is overwhelming to me sometimes as I have to remember one step at a time....
The interview was about transitions with Nicole and her starting online college classes on Sept. 5th. First, I am grateful that she isn't actually going off to college and I still have her living with us so that is a little better. I didn't think that I would have this emptiness when my homeschooling duties were over I thought I would only have relief but two months into what would be our school year I realize that I really do miss it and wonder how do I fill this gap.
Life for Nicole and our family is different for a family with a healthy child who is going to college. There are a lot of other responsibilities. I am responsible for Nicole's medical issues as her power of attorney because she is 18 and considered an adult so in order for her not to have all those burdens Nicole had to give me this authority. I am also responsible for her financial matters and her representative payee for her disability checks which I have to be accountable for. I think of myself as Nicole secretary or administrative assistant. I know what she expects from me and I try very hard to respect those boundaries. I do not ask her (or try not too... this is a work in progress) if she needs help with something... if she does... she must ask for it. I know this is hard for her because she doesn't want to depend on me and have to ask others to help her.
I always feel the need that I must explain myself as to why I am so overprotective of Nicole even though she will be 19 in less than three weeks (wow... where does the time go?) It is hard for people to understand if they don't have experience with this situation. How much should I still push Nicole? I ask this question with college... she had orientation last week and I was so proud that she had finished it and scheduled a conference call with one of her instructors (she's taking two classes). I didn't know she had scheduled this until the phone rang and I saw Nicole on the phone. I mouthed to her to let the instructor know about her medical issues. She didn't need to go into detail only that it had a potential to influence her schoolwork. After the call I asked her if she told the teacher and she said "no" because the call was being recorded for the other students. She said she would PM the teacher. This was last Thursday. I asked her last night if she had done this and she said "no". She also has an assignment that is due prior to tomorrow.... she either had to make her weekly schedule or take a picture of her desk/work space. She didn't want to do her weekly schedule, this would allow her classmates to know she is ill. I don't understand why she feels compelled to keep this a secret or is ashamed of this but I have to respect this. She also thinks her life is boring. She decided that she was going to take a picture of her desk area. The problem is her desk was a mess. She asked me to help her get it organized which of course I said I would do. I make her take everything off her desk but her computer. I have asked her numerous times what she needs on her desk and she says she doesn't know. I am a little upset that she asks me to help her but when I do try she blows me off... I guess this is my problem... As of last night she still hasn't completed this assignment. The way her classes work is she has a module to complete in each class every week which runs from Monday to Sunday. The modules consist of reading, an assignment of some type and then a discussion. I need to find a balance of not hovering but still knowing that she is getting the work done without her getting behind or overwhelmed. I thought this morning as I was thinking about this blog that I would touch base with her on Friday's to see what her assignment was and if she has completed what needed to be done. If not, I have Saturday to make sure she gets it done. The rest of the time I will need to step back unless she comes to me. This will be very hard for me to do.
Ever since Nicole graduated I feel like I am just floated a long with no place to go so to speak. I have devoted so much time to Nicole's schooling and her medical issues that I haven't had much time to focus on myself and what I want for myself. I know even with Nicole's illness that within a few years she will want to be on her own and move on with her life. I need to have something that fulfills me. Yes, I have goals like to declutter and organize my house which I have been working on. I would also like to shed some pounds and get into a healthier lifestyle. I would like to continue to learn about pharmacology and at some point get certified as a pharmacy tech but I don't think that I can work outside of the home and still focus on Nicole's medical issues at this point in time. I do try to save money where ever possible and make a few bucks here and there when the opportunity arises. I would love to find something from home for a more consistent income. I want to continue to learn and grow into the person I know I can be. I have been very interested in herbs and herbal/homeopathic medicine for quite a few years and would like to learn more about this and how it applies to keeping Rick and I healthier. I would also like to learn how nutrition can be a benefit to Nicole and her health. I would also like to takes some self-help classes that pertain to organization/decluttering. I still don't feel like I have a clear picture of this though. I would also like to improve my relationship with God and really learn to trust him with Nicole and her health issues and trust that whatever happens that it is for the best. I can't spend my days wondering why she has had to go through what she has and why we had to wait so long for a diagnosis. I want to be more true to myself... be more like Jesus and love others more than I do... be a light and inspiration for Nicole, Rick and the rest of my family and just forget about what others think. I want to be at peace within myself when it comes to Nicole's health and the journey that we are on with this even though this isn't the life I had hoped for Nicole or our family. I want to help others who live with the disease or any other illness that impacts a persons life. I also want to be support for other caregivers. I feel like this is too much to want and how do I go about getting this all. It is overwhelming to me sometimes as I have to remember one step at a time....
Subscribe to:
Posts (Atom)