I came across a little harsh last night in my stauts on Facebook.... I absolutely agree with what I said though. I want people to look past her illness, the oxygen in her nose, the sadness she has, etc. and see her heart something that this society doesn't do. I want her to be treated as normal but at the same time she isn't normal and she does have some hefty limitations and baggage. Find a way to show compassion and support.
This is the issue with Nicole... someone (I will use myself as an example) can make a statement to her and she will interpret what I said... for example, I say to her " I am happy today and you are sad and I am not going to allow you to make me sad so when you want to be happy let me know and we can hang out. " Now, for one... nobody can or should be able to make you feel sad/happy etc. unless you allow them too (unfortunately, Nicole hasn't learned how to do this). This is what Nicole hears from this... "you are a downer and I don't want to be with you unless you are happy." She feels like I am putting conditions on whether or not I want to spend time with her. I'm not saying it is a totally wrong interpretation. When Nicole talks to me I have to clarify is this actually what the person said or what you think they said? If it is in the form of a message (text, skype, IM etc) I will have her show it to me. I have to try to help her take only the words that was said and not what she interprets them to mean.
Nicole had a very emotional week last week. On Friday, because of her sadness and depression I called her psychiatrist and scheduled another appointment for her to see him today. Nicole has been on the same dose of her anxiety/depression medication since she was 10. Earlier this year her dosage was increased because of depression which I believe stems from being told that she needs a heart/lung transplant but at this point you are too stable and we can't list you. I know she said she assumed that she would need the lung/heart but still when you actually hear it and it's a reality it's different. I also feel that she doesn't feel like she is good enough to have a serious relationship with a guy, to eventually get married, etc. Why would some guy want a relationship with her when they can have a relationship with a healthy girl who can do all the things that she can't. She is at that age where these thoughts come into play. On July 3rd she saw her psychiatrist and once again I asked for an increase in her medication because of anxiety and her depression. I do know that based on her weight her dosage could still be doubled. Nicole takes (on a daily basis) 16 pills each day and that doesn't include vitamins. She also takes other meds like Immodium AD on almost a daily basis for diarrhea which is a side effect of the Remodulin. She also takes narcotics with every site change as well as nausea medication which is also a side effect. I fill her weekly pill containers on Sunday evenings. It occurred to me that I could have not given her enough anxiety meds. She was taking a pill and a half every day but when she was at the doctor last he upped it and so she was going to switch to just one pill because of the higher dose. He electronically submitted the script and Medicaid will allow for the immediate filling of a script if the dosage is different. I picked up the script a few days later and started using this. Last week and I believe the week before I was using the old prescription and just giving her two pills. It occurred to me last night that I couldn't remember if I gave her two pills or not last week. If I didn't this would explain Nicole's behavior. I know I gave her two pills this week. I asked Nicole if she paid attention and she said no. I would feel horrible if my mistake was the reason for this emotion. When I filled her weekly vitamin container I wrote with a sharpie on the top how many pills she takes daily for instance she takes two Vitamin D's so I wrote 2 pills. I will do this same thing with her prescription meds.
I will also need to call the gynecologist again as Nicole is still having female issues and the doubling of the hormone hasn't stopped the problem. She was actually having cramps over the weekend. She sees the doctor in the middle of September. They are going to have to call in another script for 2 pills every day so Medicaid will fill the script because I will run out two weeks prior to being able to fill it. This would mean I will have to pay $65 for a month supply of it which I realize in the context of some of her other meds is cheap.
She will see her counselor tomorrow after rehab. I hope that this will help her. She has to find a way to find happiness within herself and not rely on others to make her feel this way. She has to find value and purpose (which she doesn't have) within herself and to know that she is normal but just was given a disease that she did nothing to deserve. I know how hard this is. She doesn't understand why she's sad and if she could just figure that out then she could do something about it. If I have too I will take her to the counselor every week but this another expense I have to pay out of my pocket because as her counselor says "she doesn't have the right letters behind her name so Medicaid doesn't acknowledge her. I really don't mind paying if this is what Nicole needs though. She is currently seeing her every other week which I increased a few months ago from once a month.
I want Nicole to see how beautiful, smart and talented she is. She thinks everything she feels/thinks isn't normal when I tell her all the time it is. She has the most beautiful heart and I always say she has more loyalty that a dog.