WHY YOU NEED TO EDUCATE YOURSELF ABOUT YOUR MEDICATIONS AND CONDITIONS
Have you ever wanted to be a fly on the wall. Yesterday I had an opportunity to hear part of a conversation between a medical student and a doctor. What caught my attention is that they were talking about some of the Autoimmune Arthritis diseases. One comment that really caught my attention was about Mixed Connective Tissue Disease. Now I must admit that I know nothing about this disease. I have Rheumatoid Arthritis and have mostly researched that. This Med Student was saying, “Why if they have Mixed Connective Tissue Disease am I treating them like they have Lupus. Why can’t they have questions on the test like what percentage of patients does Tocilizumab work on, with this disease. I have to say that I didn’t even know that, that drug was used in this disease. The conversation went on to complaining about how the tests scores were given.
My whole day was somewhat of a comedy of errors. I woke up with a rash that I had had for a week. It has been a annoying and just doesn’t want to seem to leave. In short it is driving me a little batty. I told the nurse about this right from the start. She said I needed to see the doctor in order to get the go ahead for my infusion. I understood and agreed. I had said to my husband earlier, I wonder if they are going to let me have it, given the rash. I had been to the GP in the morning and he wasn’t sure what it was. Because it had persisted for a week he gave me some steroid cream. I was happy with that. While the doctor in the infusion room and I were talking we discussed my medication. Now I know that Arava can cause a rash. I also know that if you develop a rash then they can give you another medicine to get Arava out of your system faster. You see with Arava it can take up to two years for the medication to flush from your system once you quit taking it. This is information I know. It is information I learnt before I ever took the first dose of the drug. In fact my Rheumatologist at the time informed me as soon as he gave me the prescription.
The Doctor in the Infusion Room did not know,
1: That Arava could cause a rash.
2: That there was a drug you could be given to speed up the process of flushing it from your system.
Once again I looked over the list of all the drugs I am taking. I realised that Orudis was not on the list. Not entirely sure how I managed to forget to tell them that one. In fact the list I have of my medications on my phone has Orudis listed. So why it wasn’t on the records at the hospital I have no earthly idea. The problem came when this Lovely Doctor didn’t even know what Orudis was. I mean really. It is an anti-inflammatory, and she didn’t know that. She works in an infusion room at a hospital. People come to this hospital from 3+ hours away to get infusions, and they didn’t know what it was.
I find it appalling that a medical doctor in charge of our health care while we are getting infusions don’t know some simple things about our drugs. My Rheumatologist felt it necessary to tell me about the rash. It was something that occurred commonly. This same doctor is the one that was talking with the Med Student. How can we expect to get the best possible care, when the doctors are not getting the best possible education.
Another problem I have had before and I had again yesterday. The nurse who put my cannula in, put it where she wanted it. I told her when she was putting it in it hurt. I told her when she was taping it down it hurt. She asked if the flush of the cannula hurt. I told her no. So she told me, then it’s fine. She also went on to say, that maybe I am just extra sensitive. Boy I have to say that insulted my sensibilities. Besides it is good to rotate positions. The cannula was put in my hand. One of the other nurses told me she would move it if I wanted. She was very sympathetic and kind. Told me that even though the flush was good, that she would move it if I wanted. I didn’t want to be a “problem patient” so I left things as they were. It is horrid to be put in a position where you can’t argue. Medical Personal should never make any patient feel that they don’t have options. I have been in the infusion room before, complained of pain, and the cannula was immediately moved. In fact the nurse who did that one for me actually did end up being the one who took mine out in the end. She told me that the hand is supposed to be the most painful place to have one put in. She also said it was probably sitting on a valve. Again many times over the years I have been made to feel powerless. I am hoping that I can actually get my gumption up and stand up to these people from now on.
So I had a student nurse come over to do my obs. First thing she asked are you in pain. At that stage I didn’t see the point in trying to explain and educate so I just said no. You see during my infusion the rash I mentioned earlier started to spread. The infusion was stopped and again the doctor started making more phone calls. This whole time I was made to keep the painful cannula in. I was given information as soon as the doctor got it. She really was a lovely woman. After a couple of hours she and my Rheumatologist put a plan of action together. My Rheumy wanted me to be given Hydro cortisone Intravenously, after I was given that, they would make a decision when I could be released. They also decided I needed to be given Pred for 3 days as well as Phenergen (Anti-histamine). Then I had to wait even longer for the Infusion Room Doctor to write me a referral to a Dermatologist. Yes after all that I now have yet another doctor I have to go visit. I was told this Dermatologist was a great guy. He was also willing to have me come in for a quick chat that night. My experience with him was odd to say the least.
Well at about 5:20 I got to leave the hospital. I would have to go back once the Dermatologist made it back there. I went with my family to my In Laws to have dinner. Yesterday was my Step Father In Laws birthday and we wanted to get together on the day. At about 7:20 or so the Dermatologist called. So my husband and I went back to the hospital to have a chat with this new doctor. Now I have to admit I am an Australian/American Duel Citizen. I have been in Australia for a little over 8 years. I love Australia, but at times I don’t like feeling like a token accent. Yes there are times I feel that way. People are so excited when they meet me, I have an accent it is different. Then the newness wears off and they could care less. So this Dermatologist asked me questions. Like what my allergies are. I started to list them. Fun, I even forgot a few. When I told him I was allergic to peppers, he gave me this look. I elaborated and told him that I was allergic to Capsicums (Bell Peppers) and Cayenne Pepper. This is where the doctor interrupted me. He said “I find Americans funny. You know we understand what you mean when you say things. We also understand you’re wrong. We know what you mean when you say Ketchup, and we know your wrong.” He went on a while about how wrong Americans were with the things we say and how we say them. You know I get that Americans have different names for things. I also get that we say aluminium differently. Oh and by the way Tomato Sauce tastes different than Ketchup, and Ketchup has to be refrigerated. Just saying. So after being mocked for being an American this doc asked why I was on all the medications I was listing for him. Um cause I have Rheumatoid Arthritis. Now right off the bat he explained to me that at this hospital Rheumatology and Dermatology have a very close working relationship. In fact the only reason he saw me last night was because I was a Rheumatology patient. So how he didn’t know I had RA I will never figure out. Again we are going through the medication. We get to my anti-depressant. I explain to him why I am on it. He goes so are you on it for pain management or depression. Again I told him both. Now I swear this really was the next thing out of his mouth, “So you mean you have pain for your Rheumatoid Arthritis”? Yes folks these are the people who are taking care of us.
First I have to deal with educating a Medical Doctor on two of my medications. Then I hear a Medical Student complain about what she feels is a sub par education of Autoimmune Disease. Then I have another Medical Professional ask if my RA really hurt me. If you want to know why Awareness is important, there you have it. Like I said it was a comedy of errors. It as in no way fun, and I may have to yet again change Biologicals. At this stage I don’t think I have the energy to even contemplate having to start a new medication. I am not going to jump the gun though. I will take things as they come. I have a wonderful family who are there to help me. I am so very blessed and lucky to have the support system I do.
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5 comments… add one
Hi Lydia, I also live in Australia, and find everybody where I live very capable and helpful with my ra, where do you live…
HI just wanted to let you know that I am in NSW in the Southern Tablelands. Sorry it took me so long to see this and respond.
Lydia, I’m sorry you went through this. I am thankful to have a wonderful rheumatologist, but I’ve definitely had my share of doctors who were not capable of meeting my needs. One time, an internal medicine doc was injecting my ankle with cortisone. After he put the needle in, he asked me, “Do you think I’m inside your synovial space?” And he was serious! My ankle was swollen to the size of a grapefruit, my skin was so tight I couldn’t tell WHAT was hurting, and this guy doesn’t even know how to tell when he reaches the synovial space? Lesson learned. No one injects anything into my joints except my rheumy.
I hope your future interactions with doctors end up being better.
Hi Lydia, I can relate to the above. I’m an Ozzie pom In Sydney and find sometimes – though not as bad as your experience – some of these mad questions when I go to the hospital. Good luck with the biologics. I was on Embrel – huge rashes the size of saucers and then on orencia. The Orencia seemed to work for a while then I felt like I was being poisoned. I’m currently seeing a gastro and now an Endocrinologist for thyroid and am having these rather annoying convos about RA medications too. Ho hum.
I am so sorry, I hadn’t checked back in so long. I am in NSW, in the Southern Tablelands.