Today has been a really great day and yet a super frustrating day. It all started on Monday afternoon, when a Keene Medical employee (this is who provides Addison's oxygen and stuff) named Tammy called me. She said that she needed to come check the oximeter to make sure it was still functioning OK. With many people dropping by my house every week (therapists, nurse, nutritionalist) and with many doctor's appointments out each week, I sweetly (I thought) said that that was fine, but since we have so many people come by each week and so many appointments out, I just ask that she come while someone else is already coming. Otherwise every day is taken up with medical stuff and leaves us with no time to be a family. (Remember that this was Monday that she called) She replied that it was due by Wednesday so she needed to come by then. I replied, OK, Tuesday would really be best for us since we already have someone else dropping by for an appointment. Tuesday won't work for her, she said. Only Wednesday. Wednesday at 1:00. I felt extremely bullied and knew that an entire day was now ruined for us, but meekly agreed. Note: we already have other appointments for three of the other days this week. However, when my best friend (who is in town for only a few short weeks) at the last minute had only this day to spend with me, I called back in to Keene Medical and said that we would have to reschedule (I would have made our plans around this appointment if it had been made further in advance, but since I had felt so bullied in making it in the first place, I felt like it was OK to cancel). I left a message because Tammy wasn't available. When she called back, she was very unhappy. This is how the conversation went down:
Me: I am very sorry, but today won't work for us because something has come up. I would be glad to reschedule (and I gave her four other days that would work)
Tammy: But it is due today. You need to have it checked today.
Me: We have a lot of appointments. I usually schedule them at least two weeks out. If it was due by the end of the month, why did you wait until there was only two days of the month left to call me?
Tammy: I didn't get around to calling you until Monday and you agreed to the appointment today.
Me: Honestly, I felt really bullied into making that appointment. Furthermore, (I finally stuck up for myself-I am bad at this), I really do need you to schedule with one of the other therapists dropping by because we can't let our lives be controlled by having someone come by every day. Or, if it simply won't work to line up your visit, I ask that it be later or earlier in the day. If it is at 1:00, that cuts up the day and means that we really can't do anything else.
Tammy: Earlier or later don't work for me I have other plans.
Me: Even just one hour earlier at 12:00 would be better
Tammy: That doesn't work for me. I eat lunch at 12. I am going to have to report you since you are making the oximeter unavailable to us to check.
Me: I am not making it unavailable. I am just asking for some more advance planning and some consideration for our schedule.
Tammy: It is due today. I am reporting you since you are not cooperating with what I need to do.
Me: It is not my fault that you called me with such short notice. You have to understand that we have so many appointments for Addison that we really do need more time to make things work.
Tammy: We have to check the oximeter every month. I am reporting you to our agency so that they know that I tried to check this but you refused to let me.
and so on and so forth. I hung up and I was shaking I was so upset. I immediately called Keene Medical back and asked to file a formal complaint and also ask that someone else come check the oximeter. They are making over $1,000 a month on us between the oxygen and everything that we need for Addison. Is it really too much to ask that they are considerate of everything else that we have going on? I am the customer, right? I am paying them the money, right? Why was I made to feel like the scum of the earth on the phone to this lady because I wasn't lining up with what was convenient to her???
Anyway, my friend then showed up and we all headed down to the hospital because I needed to pick up Addison's Sildenafil from the hospital pharmacy because this is the only pharmacy in the state that carries this drug compound. I had called in the refill yesterday because Addison used the last drop of it this morning. (exciting time out with my friend, huh) I went to the pharmacy (as I have countless times since March without incident) to pick up the refill. However, this time it was not done. Here is how that conversation went:
Pharmacist: There were no more refills.
Me: I know. They called yesterday and asked for the doctor's name (who was there at the hospital) so that they could fill this. I didn't hear back after that phone call, so I assumed that everything was OK.
Pharmacist: If we called everyone back, we would be calling hundreds of people.
(great business plan, huh?)
Me: I have never had a problem filling this before. We just ran out this morning. (I usually time it pretty close so that we don't have to fork over the $40 copay any sooner than we have to. This has never been a problem before.)
Pharmacist: We also noticed that you just refilled this perscription 6/1. Why did you go through it so fast. (looks at me suspiciously....note...the more common name for this drug is Viagra)
Me: Dr. Yeager increased the amount we are to give her earlier this month because she weighs more now. 2 ml every 8 hours.
Pharmacist: Oh. Well, we paged the doctor yesterday and we haven't heard back from him.
Me: We have never had a problem before. We ran out this morning. My daughter needs this to breathe
Pharmacist: That really isn't my problem. Also, you should know that this particular compound we can't do without 24 hours notice.
Me: I know. That is why I called it in yesterday.
Pharmacist: I can't help you until I heard back from your doctor.
Super frustrated for the second time that day, I ran up the stairs to the Children's Specialty Center to ask them to page Dr. Yeager. I was not leaving without Addison's medicine or a promise that it would be done by the next time that I needed to administer it (later today). I would not stand idly by while my daughter fights to breathe. (I know that sounds super melodramatic, but I was prepared to roll some heads if that is what it took to get her medicine today) Anyway, I spoke with a very kind receptionist who called Dr. Yeager's nurse Dawn (with whom I have had many phone conversations in the past). They got it all sorted out and the pharmacy meekly replied that they would have it ready in a couple of hours. What was with all of the nonsense about 24 hours notice???? Apparently a mom pleading for her child's ability to breathe with minimal effort isn't enough swing at a hospital pharmacy.
Ahhhhhh, it feels so much better to have gotten all of that out of my system. Seriously, why does it feel some days as if I am all alone in standing up for our family and our daughter. The word advocate took on a new meaning for me today.
After all of the drama was over, I was able to spend time with my wonderful friend Karen (who I rarely get to see) and my sister Andria and of course, Addison. So, in that respect, it was a good day. Whenever I even start to think about the other two incidents, I start to feel stressed out again. Yesterday when we were applying for Addison's personal care assistant, the person filling out the application stopped at one point, looked at me, and asked "What is your stress level like dealing with all of this?" At the time I said "Oh, some days are better than others"....If she would ask me today I'm pretty sure I would give an answer that I would regret later! Am I just being a drama queen? I feel like I legitimately got stressed today (even though I didn't yell at anyone), but now I feel guilty for filing a formal complaint against Tammy and for getting so frustrated at the pharmacy. Some days it seems that no matter how hard I try, it still isn't enough.