This week was hell. I barely slept, I have actually been getting panic attacks again as well! When I do sleep, it’s during the daytime, exactly when everyone else wants to see me, so I miss visiting with family and friends who are in town for the holidays.
There is one positive thing about this week! I got to meet my seester’s BF. He is the first person who, upon meeting me, seemed totally comfortable and ok with my health quirks and all that comes with it! He even got all the vaccines, etc. necessary to keep me safe, JUST to be able to visit our family! So not only is he sweet, polite, and interesting (Not to mention I LOVE how he treats my sister), he also isn’t scared off or weirded out by all the complications and eccentricities that come with dealing with my Lupus. I am sorry I didn’t get to spend more time with him, but I don’t think this one is going anywhere , so I’ll have plenty of chances that I can look forward to!
Aside from this familial break from the stress of my health-life, my week was pretty complicated! I was on the phone with doctors and doing research everyday!
I called daily to ask questions of various specialists that I see. A nurse would get back to me with a brush off or a hint of information. When I managed to get a hint I would ask more questions of the doctor, causing the nurse to say she’ll get back to me and I am left tied to my phone waiting for yet another phone call. When I did manage to get an actual answer to a question I was always very thankful, I imagine the doctors are all very busy, I am one of many patients they see, I can’t be the only person with emergent issues and questions?!
But this still doesn’t make me any less frustrated by the walls being put up and evasions to my inquiries about my own health situation. Questions as simple as; “when are you scheduling my next appointment?” couldn’t seem to be answered by any doctor. Mind you, I didn’t actually get to talk to a doctor. I spoke to nurses who would read off a letter or note the doctor had left for them to relay to me. Honestly these women are angels. They dealt with me getting more and more frustrated with not getting answers.
Asking the same questions over and over doesn’t help, doing it louder helps even less.
But these ladies were patient and sympathized (in general, I am having a problem with one office). The nurses even go so far as to reread the questions they write down and ask for clarifications they think the doctor might want, these things help me have more of a chance I will actually get an answer the next time the nurse calls! They are on my side. These nurses, receptionists as well, want to help.
But somewhere there is a disconnect. Between how busy a doctor’s office is or who I talk to on the phone v. who speaks to the doctor or whether the doctor is distracted or is in a rush. Either way I don’t get all, if any, answers per phone call. Often all I acquire are more questions. My anti-nausea medication prescription was called in incorrectly by three different doctors, yet it is in my file at each of their offices, so to is my explanation and information which has all been written down by each office’s nurse when we have spoken on the phone.
But there is the disconnect between patients and their doctors?
I even had my father making phone calls. For one thing, he wakes up A LOT earlier than I do , but also having grown up with this disease, too often I see a difference between how a doctor reacts to one of my parents versus the “young patient” or even the “young patient and her significant other.” My parents both have rights (as I signed the papers) to access my medical records and speak to my doctors. Like I’ve said before, it’s important to have people around you to guard your back, especially when feeling as exhausted as I have lately.
I’m lucky to have such a large immediate circle of support. I am even more lucky to have growing support from many other outer circles that either have always been important to me, so this support means more than they can imagine, so too are the number of new people I am meeting through this experience. I am learning that all of their support is invaluable not just for the advice, but to know that I am not “alone” in my experiences no matter how unique each one of our situations may be.
By the end of Saturday night (that’s right, we called daily for a week), we finally got answers.
First: I’d like to point out how surprised I was which doctor I actually got the definitive information from. Honestly, I would have expected one of the doctors I had a more long-term relationship with one of the doctors that, having experienced more with, I already trust more.
The oncologist is who called with the information!
You’ll love this! Guess who the oncologist called back with the information about my test results and when my next infusion would be? **Granted we both left messages, cause I seem to be getting nowhere with this office** But she called my father back to tell him my test results and when my next appointment is!
Seriously! It’s not like I’ve been an adult for 10 years and all… nope. This brought me back to the juvenile clinic I used to attend. Whether she meant to or not the oncologist made me feel like I was the child being talked about/around in the doctor’s office. What she may not have realized yet, is that I’ve been making my own medical decisions since I was 10yrs old. My parents helped with research and discussed decisions with me, but they were MY DECISIONS in the end! So far, it is starting to feel like the oncologist thinks she can circumvent me by having my parents decide on my treatment plan for me instead of even discussing it with me. If this continues it will be a big indicator that this doctor REALLY isn’t gonna work for me! I am giving it a try tomorrow. Monday is my 2nd Infusion and I will be seeing the oncologist while I am there for the treatment, despite the fact that her office is in another part of town.
This could be very interesting. Due to the fact that I will have half my immediate family with me. Each one with their own questions, protective curiosity and supportiveness to lend to the situation. After the encounter with this doctor’s nurse on the phone at the beginning of the week (what led to all the week’s difficulties), I need a lot of second opinion perspective on the situation, not to mention distractions and fun, to keep my blood pressure down!
**Watch me get white coat syndrome knowing I have to dwwal with this doc anyway**
Did I mention I’m not looking forward to this?
That’s ok. I’m making it fun. I’ve picked out a festive outfit my socks, panties, and earrings are christmas-y!!! I am wearing my guardian angel pendent knowing that all my extended family Down South is thinking about me. I am also bringing a cute pair of purple fuzzy socks given to me in a care basket by our couple friends J&J! I remember getting chilly last time I had the infusion until I put on fuzzy socks so these will be perfect (Plus they’re so silky!).
My Seester, who works in public radio, is audio taping my experience for family understanding, remembering, and documenting the experience in general–but just for us, not for radio. That my Seester even has an interest in supporting and experiencing this with me, let alone seeing and understanding what I am going through now with my disease more advanced than what she saw when we were children, means more to me than she can imagine!
My mother will be there for the first doctor’s appointment in a very long time. Being a teacher she gets very few days off. When I was little all of my memories are hospital trips with my Momma. To have her there with me again brings back the calm felling I remember from doctors offices when I was little, that feeling that everything will be ok? This might be the only infusion she will be able to provide support for me in person. As she will most likely be teaching for all of my others. I have an ulterior motive for wanting her there on top of Momma comfort and nostalgia: my mother is amazing at reading people. I need to know what she thinks of all these new doctors that she will be meeting Monday morning. It will be interesting to see if she reads the various doctors and nurses the same way I have.
Both my Momma and Seester will be traveling the hour to go to my infusion with me and then back home again and then back out of town for last minute shopping and to pick up my brother at the airport. Now that’s support! That much driving on the 23rd of December won’t be fun. It’s wonderful to feel loved. I might not get to participate in all of our traditions for Christmas, but what Christmas is about is This family, support, love.
My wonderful BF has agreed to stay in town and take care of various maintenance fellows who are scheduled to visit our properties yearly. These would have been hard appointments to reschedule as they are busy companies. My BF staying also allows him to get a bit more rest instead of waking up at the butt-crack of dawn with the rest of us. That way when I come home after chemo he will be prepared to be on point and, if necessary, to take care of me. He has been working nights everyday since break started. I know he is exhausted, giving him those few extra hours of sleep is almost a Christmas present in itself from my parents to him though he would never say it or ask for it, giving him a chance to relax is good for him. My dear BF is only comfortable not being there because he knows my family has done this forever with me, “they got this.”
I am still considering looking for a new oncologist, but until I find one that specializes more specifically in auto-immune diseases, I am going to have to figure out how to put aside my frustrations and assumptions and work with this doctor. But I’ll tell you what, tomorrow I plan to ask how much experience she has working with auto-immune diseases, express to her that the shaking all my specialists assumed was due to my system receiving a dosage of Decadron hasn’t gone away, as well as request that the doctor write a written script in front of me for the correct dosage of anti-nausea pills. This way I can check that it is correct this time…
yeah, I am sooo not sleeping tonight.