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Suck on this bitches

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First of all, I would like to thank everyone who commented and emailed me after my last post.

When I wrote the first of the two posts I was so emotionally distressed that I really wasn’t able to think clearly. The next morning, when I published the second post (which was really pretty much the same) I at least knew that I was happy to stand by my words in the light of day. Does that make sense?

It made such a difference to hear from you all. I felt so supported and cared for. The validation you all gave me meant more to me than you can imagine. I am so grateful to be a part of such a caring community.

I have had a much, much better day today.

First thing this morning my Rheum (I’m calling her R from here on in) called me to check how I was going. We had a bit of a discussion about how serious this flare has been and she gave me some great insights.

During this flare my back/pelvis has become dramatically inflamed and much more painful than it has been in recent months. I had interpreted this to mean that my back/pelvis is indeed arthritic despite the fact that we had previously ruled this out. Today she explained that the muscles surrounding my bulging lumbar discs become even more inflamed when my arthritis is active because my body is in a kind of inflammatory overdrive. I am really relieved to finally have a clear explanation about this. This is the first time that anyone has ever explained what’s going on down there in a way that fits with my experiences. I think in the past she just assumed that I was able to join the dots, which clearly I wasn’t.

I also thought it was really important that I discuss the Pain Management Unit (PMU) findings with her as they had made some implications about her treatment of me that were inappropriate, confusing and worrying.

She explained that when I first went to see her it was difficult to make a definitive diagnosis as I had both the back/pelvis issue causing me a lot of pain and some initially quite mild arthritis, mainly in my hands. These two things, had they both been rheumatic conditions, would have meant two very different diagnoses and therefore pinpointing a single diagnosis was a tricky business. She let me know that over the time she has seen me, my arthritis has been quite aggressive and worsened dramatically to encompass many more joints. She said that my arthritis could no longer be considered mild at all and that since we have ruled out spinal involvement she would quite happily label my disease Rheumatoid Arthritis. It might sound strange to be so happy over such a diagnosis but it feels really empowering to know that I can trot those words out whenever I am questioned by a doubting doctor.

R’s clarification of her position on my arthritis also puts to bed the doubts that the PMU had about my treatment regime. I am taking some very serious and strong arthritis medication because I have some very serious and aggressive arthritis. Simple as that.

Suck on that bitches.

R was also able to clarify that, while there has been a change in my white cell count as a result of my medication, it is in no way to a level that could be dangerous to me.

Finally, in addressing the PMU’s suggestion that I undergo some new testing, R clarified that some of the testing was impossible to do when we first met because I was still breastfeeding (massive doses of radiation from nuclear bone scan anyone?) and that the other tests they were asking for were specific to a different type of arthritis (of the spine) that we have already proven I don’t have.

Again, suck on that bitches.

It’s amazing how what has probably been a slight miscommunication between R and I could lead to me being piled with that gigantic load of horse shit from the PMU. I have always known that my arthritis is real but perhaps, if I had been armed with some of the knowledge I now have, things could have gone differently.

R was quite perturbed at their questioning of my treatment regime. She pointed out that she is not a pain management specialist and as such would not presume to criticise their recommendations in that area directly to a patient. For them to criticise the treatment and diagnosis of arthritis when they appear to know very little about either was perhaps a touch unprofessional. She may also have mentioned something about some “interesting” personalities within the PMU (the PMU is located in a hospital that she also works in some days each week).

She was being very polite.

So again, thank you my friends, the confidence boost that you’ve given me has helped me get some really important answers today and I’m not going to let it stop here.

I will keep trying.

I will keep hoping.

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6 responses

  1. I’m so glad you have some answers. I know that whatever my diagnosis, it won’t be a ‘good’ one, but I’ll just be so relieved to finally have it. SO I totally get where you’re coming from.

    I hope there is a way for R and the PMU to work together to get you some more relief.

    • Thanks. I would like to think they would try and work together but I think it’s unlikely. It’s so helpful to hear from so many people who understand.

  2. Your Rhuem sounds fantastic. I am so glad you have her.

  3. I’m so glad you got some answers.
    Being made to feel like a fool is not good for anyone.

    hugs

  4. Hooray for some answers and a Rhuem that actually gives a damn.

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