Okay, okay, I admit that I have been a bad blogger. To be honest, Behcet’s Disease is kicking my butt these days and it is making it really hard for me to do much. I am not sure how much is the disease itself and how much is the meds. I wrote in my last post that I was started back on Prednisone and Imuran. I have survived my 2 weeks at 15mg of Prednisone and tomorrow I reduce my dose to a more tolerable 10mg. The 15mg was much better than the 40mg from this summer and I was able to maintain a certain degree of calm control of my life. I have been a bit emotional and a bit of a loose canon but whether that is Prednisone side effects or just life is hard to tell to be honest. I am looking forward to weaning down and being on this drug for as little time as is possible!
Imuran on the other hand is a monstor. I was started right on 100mg a day, which isn’t that high of a dose, but it hit me hard with intesnse fatigue and nausea. Combine that with the ravenous hunger induced by prednisone and I wasn’t a happy person. I stuck it out for the first week and then I asked my pharmacist about it and she suggested I cut back on the dose and wean myself back up. I emailed my rheumatologist to enquire about this and he agreed so for the last week I have been on 50mg a day and that is it. Tomorrow is the day I go up to 75mg but part of me wants to wait until Monday. I am taking an intensive course at school right now which means one week of long ass days for one credit. I am not sure I want to deal with potential side effects for the rest of the course knowing I am coping okay on 50mg now.
We are also finally trying something new for pain. We are trying an extened release mediation and seeing how it works. I have just hit the 24 hour mark of being on it and I did still use breakthrough medication today but over-all it was one of the best days for pain management I have had in ages. My hope is that this will continue and that soon we will find a dose that works well and I won’t need the breakthrough as often. For now I am to keep a journal of when I take the extended release medication and when I take breakthroughs to see if we can find a pattern and adjust my dosing accordingly. I like that I have good health care that is really invested in pain management and ensuring I am comfortable because I am a much happier person when I am not in intense constant pain!
There are a lot of things I want to write about right now, but I am using this blog post as a way to wind down and hopefully sleep so I am going to try to keep it short. I just got a new tablet and so I am trying out the WordPress app on it right now to write this and it is pretty nifty. It am hoping that having this easy access to my blog will help me post regularly. Theoretically I can blog from waiting rooms and stuff!I think though that tonight I am going to write about needles as my closer.
Needles are a regular part of my life. I get B12 injections every two weeks and regular blood work. As a child and teenager I was the worst person in the world to go near with a needle.I literally did everything in my power to avoid them. Some injections give me vicious muslce spasms and that fear of those was definitely part of it but I just have this psychological thing with needles and they freak me out. In the last several years I had just decided to not be afraid. I did some CBTon myself and made a concious decision that they were not scary and I was fine and I needed to get over myself. This was working great until about a month and a half ago. What changed then? I have absolutely no idea.
Three B12 injections ago I found myself starting to panic. I was breathing heavily, I was anxious, and I was doing all I good to not push my doctors hand away. I think I muttered something about anxiety to her but she didn’t take much note of it. Two B12 injections ago I was clear that I wasn’t certain I could let her do it. She got it done, I didn’t push her hand away, I wimpered and breathed deeply for a while and I got through it. Last night I went back to the doctor, knowing it was once again time for the B12 injection, but this time I laid it all out there.
I explained that I am afraid of needles and I don’t know why. I don’t have any good reason for this to be resurfacing but the fear is there and it is valid. I asked her to simply talk me through it. I just wanted her to tell me what was happening as it was happening. Now I know that may seem silly. I have had a ton of injections and I do this every two weeks with the same doctor and we have a routine. I know her process exactly and I know what to expect. I could teach a medical student how to give a b12 shot in someones quad. I could probably give someone else a B12 shot in their quad. Iam very familiar with the procedure – that is my point.
My doctor opened by asking me if anyone has let me give myself a needle before and I said no, and that there was absolutely no way in the world that was ever going to happen. I have a big mental block with injecting myself with things. I could do it to someone else, but not myself. I also took this opportunity to inform her that if I end up on a self-injected biologic drug for my Behcet’s that she better know she is going to be the one giving it to me. Thankfully she agreed to that. She then got an empty needle and offered to let me hold it and touch it, to see if maybe some exposure therapy would help me out. I once again turned down this idea quickly. I touch syringes all the time and I have given injections to cats/dogs/horses on multple occasions. Holding it doesn’t bug me.
She decided she would just go for it. We got me all set up and she began. “Okay, I am going to swab it with alcohol. It is going to be a bit cold” and then she did it. Normally at that point I would start to get shaky and my heart would beat faster but it was feeling okay. I took a deep breath and watched. “I am going to pinch the skin on your quad now and there will be lots of preassure” and then she did it. I was still feeling okay with it. “Okay, now time for the poke. It’s just a little pinch!” And I watched as she stuck the needle into my leg and pushed the cc of B12 into me. All the while I was fairly calm.Out came the needle, she wiped off the injection site once more with an alcohol swab, we got my leggings back on and we were done.
The point of this story is that by communicating with me, even if it seemed like useless communication, she was able to calm me and make the injection be totally fine. I was focused on what was happening because she was forcing me to be engaged and present by narrating the process and the benefit of that was amazing. Doctors so often lost that ability to connect and communicate with their patients and the fact that calming me and getting me through something incredibly stressful was as simple as telling me what she was doing it amazing. Communication is an important tool and as professionals that is something we need to remember. We all to often make assumptions for one another, about what knowledge we each hold and what knowledge we each need and skip over those basics.
Part of me wanted to share that story because of how simple it was to calm me and get me through it, and to let other patients know that asking for that kind of narration can be incredibly helpful and it is well within our rights. I also want us to think about the role that the relationship and interaction between doctor and patient plays. This is something I think about a lot given all of my health care providers and the fact that i hope to work in health care as well. Those bonds that form and the way we communicate within those relationships are so crucial for accessing health care and for feeling safe in doing so.
I could go on more about communication and health care and perhaps I will dedicate a post to that one day soon. If there is anything that anyone out there wants me to write about please do let me know! I appreciate topic requests and I am happy to honour them!
Feisty, Deaf and Disabled 