The doctor appointment.

I first have to say: forgive me for any spelling or grammar errors that may be in this post. I haven’t been to sleep yet and am desperately and overwhelmingly tired.

I have mixed feelings about my doctor appointment today. By the time I was called in it was clear that my doctor was running behind and there were already people waiting for their appointments despite the fact that I had 4 appointments booked back to back. At first she suggested I be sent to a pain clinic until I informed her that I had already graduated from a pain clinic program at the Children’s Hospital a few years prior. I told her that I remember all of the suggestions and tools that they gave me and doubted that another of the same experience would be very beneficial (not to mention that the travel is very difficult financially). That was fine and she seemed in agreement.

I handed her the things that I had written out earlier and explained how my concentration difficulties, pain and lack of sleep made writing my thoughts and experiences out the easiest way to explain my situation thoroughly. She skimmed through them – more along the lines of glanced – fast enough that I knew she hadn’t taken in hardly anything that I had written. This was a bit frustrating and insulting. She didn’t even bother to keep the paper to read later, instead she handed them back to me.

My biggest problem with the appointment is this: my doctor seems very intent on pushing Dilaudid on me, as a means of regular pain control (instead of sporadic use). She’s continually done this despite my reasons for not wanting to replace my tylenol 3s with the Dilaudid (Tylenol 3s have been my more regular pain management opioid for many years). My view is this: I’ve been controlling my pain with the T3s for six years now, and have generally been on the same dose without any significant tolerance increase. However, with the Dilaudid my tolerance grows staggeringly fast and compared to the 6 years with the T3s and no tolerance increase, I seem to have to up my dose of Dilaudid at least twice a week (which is just not okay: to go from taking 2mg once a day to having 6mg twice a day hardly work within a few weeks). Now mind you, this happened when my ribs were subluxated and I needed to be constantly medicated because of the intensity of that pain. 

I’ve had a hard time coping with the needed amount of medication since having taken the Dilaudid regularly.  Especially when I’ve been so strict with my medication intake all these years and spent so many days desperately needing more pain relief while not allowing myself to have it. I know that may be confusing to some people – why I wouldn’t just take the medication when I need it – but if you think of the fact that I’m only 19 and will be in pain for the rest of my life, it’s just not a practical solution. My needed dose would increase to an insane amount if I regularly took medication for the rest of my life, and eventually the pain killers lose their intended effect on pain, often causing more of it in the end.

On top of this, Dilaudid also gives me fairly severe nausea to the point where I need to take gravol with it everytime or I just end up throwing up, and even with the gravol my stomach feels dreadful. My Tylenol 3s don’t do that at all. Both this appointment and the last I’ve explained this to her but it seems to go right past her head. She doesn’t acknowledge what I’ve said at all and has both times ended the appointment while still advocating for more Dilaudid use instead. Last time I thought it was just because I was a fit in appointment and she was an hour behind, but the same thing happened this time.

She ended up suggesting that I try what is known as a “drug holiday”. This is when you cease all use of your medication (she said 5 to 6 days should do the trick – I’ve read that 10 or so is around the target number of days), this is fairly effective in lowering your body’s tolerance buildup. Coincidentally I’m actually already on day 7 of the process. After my ribs had gone back into place I did my research on the subject in order to find a way to get back to my previous dosages. The 7 days have been very trying and painful – I’ve come close to giving up several times everyday since the beginning. But, here I am still managing it. It’s cost me my sleep – I can’t be in my bed for much more than 6 hours before it’s too painful to lay there anymore and I wake up every hour or so in significant pain. I’m going to have to buy a mattress in the next few days or so (mine is in horrendous shape). I think that a hospital bed would be highly beneficial (stacking pillows up and sleeping on an angle sometimes helps) but my room is too small to fit one. I’ve been on a steady dose of muscle relaxer in combination with ibuprofen (over the counter) in order to ease the pain whatever small amount possible. It’s got me worried about my stomach but I don’t know what else to do to help me get through the “drug holiday”.

Anyways, all in all the appointment didn’t go too well. It was alright but it had it’s downfalls, though, we did cover a bit of ground. Despite the length of time booked for my appointment I still had the feeling that she was trying to rush through everything. I’m not a fan of going to the doctors and right now I feel pretty “doctored out”.

The things that shape us.

I have a long doctor appointment today to be entirely focused on my pain and the management of it. I have some specific things that I need/want to talk to her about, but I’m afraid. I’ve always been frightened of and extremely uncomfortable with telling doctors the truth and being honest and vulnerable with how much pain I’m in and how it’s affecting my day to day life. I feel like a fraud and I’ve never understood the nagging voice that I have when it comes to my chronic pain, the one saying you’re a liar, you’re a fake. Is it denial? I don’t think so because I know that I’m in pain and I know that there are a thousand proven reasons for it. But I somehow feel like I need to be convincing, like I need to decide how I’m going to act beforehand so that my gp will believe me, when the reality is that I should only need to be truthful.

I think am fairly certain that the reason for this is the treatment that I received early on in my dealings with chronic pain. I was seen as someone who was either faking it or whose pain was entirely psychosomatic. I went to my multitude of pointless doctor referrals with my jaw clenched, knowing that I was about to walk into a room full of accusations and judgement, when what I desperately needed was understanding, acknowledgement and answers. For that period of time I was suffering and scared but I felt that – despite the obvious – I needed to prove that to everyone.

I feel like those experiences cemented my deep seated fear of not being believed and being judged. They may not sound traumatic now, but at the time they were devastating. Here I was, someone who not even a year ago was leading a perfectly normal life, but who was now in daily, excruciating, frightening pain that took away my friends, my school life, my sports and my normalcy. The people that should’ve been helping me, who should’ve been my advocates were the ones that tore me down and made me question what I knew in my heart was the truth. I learned then that when you’re told something often enough, that no matter what you know, you sometimes begin to believe it to be true.

I know that if I’m to be helped that I need to be honest and assertive. And for the most part I think that I’m slowly getting better. Sometimes it just depends on the day and my drive to fight in order to get the best treatment that I can at the time. I fought at my last appointment because the amount of pain that I was in left me no choice, I knew that I couldn’t walk out of that room and go back to things the way that they were.

I’m more prepared for this appointment. I’ve written down every bit of the daily pain that I experience, the lack of sleep, the difficulty in concentration and the low mood because of it all. Aside from the fact that I think it’s helpful for all of us to make lists to refer to while at the doctor, writing has also always been by far the most comfortable form of communication for me. I can say things in my writing that I could never say out loud and it gives me a voice that I never would’ve found otherwise. 

“Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.” – Joseph Addison