No Love Lost

It was that time again to go and see my favourite (I am being ironic) consultant Dr X.  My husband was away working and there wasn’t a cat in hells chance I was going solo,  as I never felt completely comfortable when on my own with him. I decided to bring in the big guns…. Mother. My Mum is great in these situations and she gets along with everyone. Since being diagnosed with RA, she has been, along with the hubs, one of my biggest supporters. She is normally the first to disagree with me if she thinks I am barking up the wrong tree, but I was happily surprised when she said that she thought my RA was diagnosed too quickly, 6 weeks to be exact, and to have me put on such hefty medication seemed a tad drastic. She called me many a time to say she had found something else out or spoke to her friends who had it and they didn’t think I had it.. It was lovely to have the fighting spirit type of support instead of the I feel so sorry for you sympathy.

Now I knew this time I was going to see Dr X that I had a few questions for him regarding my medication and the impending removal of boobs that was going to make him roll his eyes. I also knew that he was not a supporter of the boob theory or me not taking my meds, but even though I would rather have not seen him at all, I knew I had no choice and had to just deal with it. I really wanted to come off the methotrexate for a few weeks to really see what was going on in my body, but the other side of me was petrified that if I came off it, the RA would take hold and I would be in real trouble.

I wanted to have another anti CCP test done to see what my reading would be. This was for two reasons. I wanted to make sure it wasn’t wrong the first time, no test in the world is full proof, I may have been unlucky and had a bad reading. The second reason was to check it before my explant, that way if after the operation it became normal then we would definitely know it was my implants causing the chaos in my body.

My Mum travelled up from Essex the night before and we worked out exactly what I wanted to ask. I even printed off a little sheet of questions and a few paragraphs of information, backing up my theories, to help me get through the meeting. My memory was so fuzzy at times that if someone/he puts me off, that can be it, lost forever in the deep dark chasm of my brain, filed in the ‘never to be remembered’ ever section!

The next morning I woke up feeling nervous. I really didn’t want to see this man. I had noticed a pattern with my appointments though, I would always leave feeling really upset when I was on my own during an appointment, because of his attitude towards me. However, when my husband was around it was always different, I felt like I had been listened to. Hence why I decided to get my Mum to come along for the support. In every one of my appointments, Dr X would dictate a letter for my GP and it would always have the same line in there somewhere: “Abbie is still struggling to come to terms with her diagnosis”. What I wanted to add was; “NO, Abbie is struggling to come to terms with your dismissive attitude”.

Dr X had no idea that I doubted his professionalism not just because he was dismissive and rude to me when no one else was in the room, but also because of a conversation we had during our second consultation. This was after all my blood results had all come back and we were discussing what may be the problem. He sat in his chair, with my notes in front of him and said “ I am concerned that your anti ccp count is high, however it still could be viral arthritis, lets see what happens.” There was also the issue of my rheumatoid factor (RF). I had to ask him what my RF result was. He said it came back positive, my GP told me it was negative and we both couldn’t find the results of this particular test on my paper work from the private hospital, when every other blood test was on it.

When my symptoms came back and I ended up in his consulting room again about a month later, that was when I was pretty much running on empty thanks to my hectic schedule. I was beyond exhausted with everything that was going on in my life. I had just finished the two week run as lead in an emotionally draining play. At the same time, I was still getting up at 6am to get my kids to school and then working during the day. My youngest then became ill, of course it was a week my husband was away working, so I ended up getting only a matter of 3 to 4 hours sleep a night for 6 days straight. I was completely and utterly burnt out. However, when I told Dr X this, none of it resonated with him. The reasons why I was exhausted seemed to be just ignored. His response was that my tired and emotional state was classic RA symptoms.

So I suppose he was right about one thing, I hadn’t accepted the diagnosis but that was because I had too many unanswered questions in my head.

I also had no fight left in me at this point either, still exhausted from my body trying to cope with the side effects of the concoction of steroids and MXT and emotionally drained 24/7 I was becoming the less able to put up a fight to get my points across and make my points clear and concise. After the worst Christmas on record in the Eastwood household, I was an emotional wreck. I cried every day because I felt so ill and I knew it was the drugs that were the cause. The drugs are renowned to have nasty side effects, I had all the ‘minor’ ones on the list; sickness, hair loss and tiredness. My hair was already in a terrible state and had been thinning for years prior to starting these drugs, but they had already made matters worse for my struggling locks, my hair was now very dry and breaking. The frustration to be heard, to have my questions answered regarding my RF and the continuing fight to have my Lyme test done that was so important to me, drained every last ounce of life I had left.

I honestly felt at times that I was losing my mind. Some days were darker than others. I would lie in my bed, as I did everyday, too tired to get up. I would just stare at the old roofing beam that ran across the room, thinking about ending it all. It was only my kids that kept me going and the thought they might be the ones to actually find me. Having lost my own father so young, I couldn’t put them through that emotional turmoil, but I hated them seeing me so broken. Having my beautiful 4 year old come and wipe the tears from my face, stroke your hair and tell me its going to be okay Mummy on a daily basis, is not how I envisaged my children remembering their childhood.

Today was the first time I had seen him since he came into the room when I was having my blood test for Lyme disease. I had moved from private to NHS as my money had run out privately and it was getting too expensive with the blood tests I had to have done every month to check my liver function.

So Mum and I were waiting to see him in the waiting area and I was feeling sick to my stomach about the whole appointment. As he walked past to get to his room, he caught sight of me and that I wasn’t sitting there alone. The look on his face said it all. Great, this was going to go really well.

We were eventually called into his office . I was so nervous I blurted out “I’ve brought my Mum with me as you scare me”. He was completely taken aback by my sudden out burst…“ I don’t scare you do I?” I just nodded. But trying to keep the mood light, everything was done with a smile on my face.  As always his first question was how are you? I replied that since being off the steroids I was a like a new person, that they had really turned me into an emotional wreck. Well I might as well have lit the blue touch paper. He immediately took offence to my statement and snapped back, “But they did the job though, they took the pain away”. I could see where this was heading, so lightly and with yet another big smile replied, “Yes they did the job brilliantly, thank you, not complaining about that.”   We then swiftly moved onto the routine questioning. First up, had come to terms with my RA? To which I replied “Yes, but I would like to talk to you about my impending operation” Notes in hand, I started my little speil about BII. I was even impressed with how much I could remember through my jangling nerves. I said that there could be a link and I wanted to rule out the possibility that they may be causing my few issues. His response was to simply turn and start typing on his computer and printing stuff off whilst I was talking. This unnerved me and I found myself trying to lighten it all but his blunt response was; “We will have to agree to disagree, there is no connection between RA and breast implants”. Yet again he managed to make me feel like absolute shit. Yet again deflated by his attitude, I decided to try and at least get one thing I wanted out of the meeting, if there was a chance to have another anti ccp test. Continuing with his royal bluntness, he hissed out that there wasn’t any point, but if I really felt it necessary and it would make me feel better, he would let me have one done after my operation and just before I came to see him in August. Just to make sure he got his point firmly across, he reiterated very slowly like I didn’t understand English, “The result won’t change” and then he laughed, “If it does I‘ll be writing you in the medical journal” My response, with a forced smile, “ Well people do defy medical science”.

I was grateful to have the test at least, but it was his attitude and the way he spoke that was so upsetting. People skills are really important in his job, we are sick, fed up people who need support, not made to feel like idiots who are wasting their time. Even if we are wasting there precious time, we are human beings with feelings. This is the way that I am dealing with my RA diagnosis, its my body and I am the one living with it. I want to make sure that I have ruled out all options before sitting back and accepting a life on that medication. If I found out again 2 years later that ‘opps sorry, we got it wrong.. you don’t have RA and I am sorry but the drugs you’ve been on have given you a liver issue and osteoporosis” I would never forgive myself for not listening to my gut instinct.

Back in the appointment room, my Mum got stuck in. She wanted questions answered, but he did a really good job of giving us the answers in full on medical terminology so that we didn’t really understand. His face was getting redder by the minute and then he snapped “ My other patients will be wondering when you are leaving this room”. The amount of rudeness had hit an all time record and I decided it was time to cut our losses and leave. But he still wasn’t finished, as I walked out the door, he added his last jab. “So now you are NHS, I won’t be receiving a hundred emails a week from you anymore”.  As much as I wanted to punch his smug face, I just smiled and left.

I sobbed my heart out in the car. All I wanted was for him to be a bit more compassionate. I wasn’t asking for him to say “ you don’t have RA, you have BII” but to be so dismissive was cutting. My Mum was furious and told me that ” I was never to see that nasty little man on my own ever again”.

It was definitely time  to find a new consultant.

 

Click here to read what happened next.. xx

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