It is a funny thing what just a few short days can do for your well being. 60 days ago I was a wreck. Emotionally and physically. Life just took hold of me and decided to throw me around a little bit. I say a little bit, because I’ve been through worse, but the difference between this experience and ones in the past is that I learned a few things during this particular ride. In the past I went along with the nightmare, got out of bed, stumbled in pain, went to appointments, took my meds, and eventually got myself physically back on track. I was numb emotionally, though. I wouldn’t try to break things into little pieces and exam them, I never allowed myself to be upset with my circumstances because that just felt selfish and needy. I know now that being selfish and needy is perfectly fine on occasion.
I know my life had shifted when I went to my 6 month appointment with my Rheumatologist yesterday. I see the best Rheumatologist on the West Coast. People travel from all over to see him, different cities, towns, and even states. I have been under his care for over 10 years now and he is the first doctor that truly lets me decide my own fate. He is very well aware that I am addicted to steroids, and is constantly reminding me of their adverse effects when I need to up them. I am in control of my meds, and he is really just there to supervise and advise. During my allergic reaction nightmare an ER doctor increased my daily 5mg of Prednisone to 40mg, and as I stated in that article….I was in Heaven. My body works on steroids. I can move like a normal human being, I can outlast the best of people without the need for caffeine pumping through my system 24 hours a day. Prednisone slowly kills me though, my vision goes blurry, I get the face of a puffer fish, and I just know internally my insides are decaying. So, I am back down to my maintenance dose of 5mg back to aches and pains everyday. There is this fun balancing act with autoimmune, and the rules are always changing and the outcome is never the same. It really isn’t a balance at all, but rather roulette.You either win or you lose. I often win, but when I lose I lose it all.
Seeing the best has its dues and not just in the form of co-pays, but in payment of time. When I was a girl and reliant on my parents to bring me to my appointments we always had to pay an additional amount in time. Hours. I remember sitting in the outdated waiting room agitated and just wanting to go home. I would run out of magazines to read and the TV only played PBS (still does). My mother would be irate for having to wait so long, and my father remained calm until we left and then it was a continuous rant all the way home about how an office could be managed in such an unprofessional manner, etc. Everyone in the car ride home including myself seemed to have amnesia about my actual visit with the doctor. I got all the time I needed, all questions were answered, all aspects of my disease were explained to my parents (for the 10th time), but most of all we were never rushed by the doctor himself. It is in our nature for the good to immediately dissolve the minute any negative is associated with it. We did that, time and time again.
I sat in that outdated waiting room for probably the 50th time in my life on Saturday. I watched a show about a British vet, I don’t sit in the 50 year old chairs because the cushions have worn down and I can’t seem to ever get out of them. I read the walls cluttered with pictures of charity events my doctor has contributed to, and for a slight second I thought to myself “I am going to be here forever today and be bored out of my mind”. You see, in my adult years I have learned to take the earliest appointment on Saturday(says something about a doctor that works Saturdays) usually 6am, and then I am the first patient and I don’t have to wait. I see him for roughly 30 minutes, leave with my prescriptions and do not return for another 6 months, but this Saturday all that was available was 7:30 meaning my doctor would already be at least an hour behind. As the thought of my own boredom creeped into my mind I became angry with myself. Angry because 60 days ago I was the patient needing the hour long appointment when I was only scheduled for 20. I did sit in that office filled with anxiety and fear about a disease and medication I had been dealing with for years that suddenly seemed to change its attack method. I had all the time in the world with the man whose care I have been under for 10 years. I was not rushed, I wasn’t even sick, and I was not made to feel guilty for eating into 3 other people’s appointments. So, Saturday I waited an hour over my scheduled appointment time to see my doctor for 20 minutes. I am no longer the sickest person in the room. In fact I usually am the freak show of the waiting room, I am under 100 years old, I don’t look sick, and so to everyone else in the room me seeing a Rheumatologist is just absurd.I sit in a room filled with bitter old folks who bitch about their appointment not being on time and I just want to scream at them, because once they get back there they always take up an hour of the doctor’s time. We get to choose the way we react about the situations we are put in. I typically check in, ask how far behind the doctor is, and then offer to get Starbucks for the receptionist and I don’t come back until she calls. It really is that simple.
As I have grown older I now know that nothing comes without asking for it first. I do not feel I am more fortunate than most when it comes to my general doctor and my specialist, I feel I have an amazing relationship with both because I opened my mouth and asked for it. Doctors and surgeons do not have time to hold anyone’s hand….especially those that are not truly ready to be well. I used to go to my quarterly appointment with my specialist, answer the questions, get my meds, and leave – 20 minutes max for a 2 hour wait time. In my most recent years those I speak my mind. I ask for the things I want, I challenge his opinions for him to give me a better answer, and I 100% am honest with the outcome I hope to accomplish. I know a lot of people with chronic illness that walk around this life filled with complaints. Complaints about their health, their doctors, and their meds. All situations are different of course, but I can guarantee 90% of these people are just not asking for what they really want, and not giving up until they receive it. You aren’t always going to have the best doctor, hell I won’t in a few years, my Rheumatologist is somewhere near 100 years old, and I’ll never find someone like him again but I can damn well make sure the next one hears me just as clearly as this one. I have found a voice. When you have a chronic illness having a voice is the most important aspect. No one hears you when you are silent. No one hears you when you have already given up the fight.
I wrote this mainly because I enjoy that I have become more self aware. More aware that not all situations deserve a reaction, and that our reactions are 100% reliant on us alone. The last few months I have been surrounding myself with much more positively from the outlook I have to the friends I keep. No matter how much pain, defeats, or obstacles life gives you the reaction you give life back is 100% the way life will continue to treat you.