One year

Today marks a year since I last saw my rheumatologist. Now for most, that would probably mean that you are in remission or your symptoms are controlled enough that you don’t actually need to see your Rheumy often, which is good! But for others, like me it means that you have probably been forgotten about.

It is my responsibility, as the patient, to manage my own health care, to set up appointments and to ask for help when I need it, but I’ve always been quite hesitant when it comes to my Rheumy because I am certainly not the sickest patient she has and because there has never been any evidence, (that my Rheumy has seen apart from me having the Rheumatoid Factor and pain) that I am actually ill.

But again that is partly my fault because I refuse to go to the doctors unless I really need to. When my knee swells up, or my ankle swells up, I take a picture but it isn’t the same as actually showing my Rheumy.

I also find it quite distressing, that all I have heard from my Rheumy this whole year was 2 lines summing up my scans and blood tests, no sign of the physio she promised to refer me too and the only reason I got the NSAIDs that I was prescribed was because of my physiotherapist chasing my Rheumy up.

I always have qualms about bothering health care professionals with my ailments because there is always going to be someone who needs to see them more, or at least that I my excuse for avoiding them, but when it comes to my health, and my life, I need to start focusing on myself, so I can get the best treatment I can.

Fortunately for me, I have a physiotherapy appointment on Monday, so I can show her the pictures of my joints (unless they are swollen when I see her) and I can show her the colour changes to my hands when they get cold, and hopefully she will at least forward the pictures onto my Rheumy. I am not afraid of hard work, and trying to get people to listen, but I find that my Rheumy listens a lot more to my Physio than she does to me, and so it would be easier for me, if she can hear about what has been going on from another health care professional so I can expand on the things she knows, providing I get an appointment.


13 thoughts on “One year

  1. Of course there’s someone who is sicker. It doesn’t mean you don’t need to see the rhuematologist too. Remember it’s your body and you have a right to be cared for. 🙂

    1. Thanks Elizabeth! You are right, I have some pictures of swollen knees and fingers etc that I was want to show my Physio, except the picture quality is pretty low now it’s printed so I guess ill just have to see what she says… Hope you are well!

      1. As long as you can see that it’s clearly swollen I think it should be fine: They love pictures because it shows you’re serious about your health. They may even call it “fancy.” 🙂

    2. I agree with what Elizabeth said – you deserve to feel healthy. And the good thing is that these days there are a wide range of options to help us with our pains etc. Arthritis can be destructive to our joints if not treated fast enough, especially in young people whose bodies are still growing. If you find that your situation is worsening, keep calling your doctors/physiotherapist so that you can get help. Good luck!

      1. Thank you for your advice! You are right, I need to take my symptoms seriously and let the NHS deal with priority patients. I’m so lucky that I have a really good Physio who practically manages my Rheumy for me, so there is very little I need to do myself at this point in time especially since we now have a plan of action developed.

  2. Yes and they really appreciated it! It helps because sometimes doctors or whoever tend to make things they don’t see out to less. It’s annoying but the “proof” helps

  3. You have just described what it is that happens with the medical professionals. You are NOT alone! I have spoken to many of those sick and under consultants and it seems all medical professionals treat us patients the same. THEY JUST REFUSE TO LISTEN!!!!! It doesn’t matter what you say, they will look like they are listening and then when you finish explaining, they will start talking about something else off topic without merely attempting a comment in regards to what you have just explained. It angers me and when I see my consultant next I have told myself, NO-MORE! All they listen to is test results, and if those test results show nothing but your symptoms are sill there, they don’t have any care in regards to that. To them nothing has shown up in tests so therefore your fine and you can’t be in all this pain. Because you are moaning and complaining about the pain. That’s when they thrown medications your way. There way of trying to come across like they care, which they done, its just to simply shut you up. They have their own budgets they aim to keep by, in hope they receive a bonus for keeping under it, so they don’t wish to mess things up in that area where cost is involved, so therefore they prescribe the ‘cheapest’ possible medication so that it doesn’t effect their budget. There are simple things they do hiding behind their medical certificate to come across /they know best’ attitude using complex words with a soft voice or a ‘caring voice’ to seem like try care. The annoying thing is we fall for this, because we are so desperate to be listened. Which of course we are, we are so use to not being listened that we do crave for someone to finally understand because then we feel they can help us. Its unfair that we as patients are manipulated by them so easily they are experts in the field… why? I tell you why, because you and I are not alone, they have had plenty of practice, they do this with all their patients that require hard work and hard graph to make us better. Unlike the easily treated conditions. Its a shame… so I completely know the emotion you are feeling, I am all too familiar to it.

    1. In all fairness my Rheumy listens to me when I am there but as soon as I am out of sight, I am out if mind… I don’t know if you feel like that too. And think it must be hard as a Rheumy because a lot of the medications cost thousands of pounds and many of the meds require a diagnosis and you to fit the criteria of the med and since I for fit any thing, I’m a little bit unlucky like that… I saw you got a second diagnosis? Do you think the doctors listen more when you have a diagnosis?

      1. erm I’m not too sure, my actual doctor is, and the consultant wh diagnosed me (but I have only seen him once, when I got the diagnosis , so we shall decide that when I next see him-endocrinologist) the second diagnosis is still just a part diagnosis, and they haven’t found out what has caused it so I have many tests upcoming. I still haven’t my joint pain and abdominal pain diagnosed yet. An I can’t start treatment for this new diagnosis until I have come of one of my medications. Its all good though, to have a second diagnosis. Its just weird on how you can have more then one diagnosis of things that are wrong with you. I have just been extremely unlucky that my immune disease has caused so much. Most people who have coeliac disease improve on their diet treatment and that’s the end of it. Ah well, can’t do much eh! That’s good she listens to you but I understand that yes when you have left they forget about you. I guess they just see so many people everyday that they just can’t fit it in.

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