The letter from the rheumatology department arrived, however it informed me of a two week wait for an appointment date due to no availability. The the next day I received another letter saying that it would possibly be another 18 weeks before I was going to be seen. To be completely honest, I was actually relieved and saw this wonderful letter as a massive sign; I was to just sit and wait this whole shitty situation out, I would regain my full fabulous health and the current flare up was simply me readjusting & detoxing. However the positivity would soon take a hit everytime the pains got too much due to a painful knee or shoulder that felt broken again. This would make me just want to call up the rheumatology department and get in there sooner.
Through what felt like a year but was only a couple of weeks, I was still very low and seeking help and guidance from anywhere and everywhere. I bought angel cards, manifestation books, I had magnets attached to my body and took more vitamins than you could find in the health food shop. I had weekly accupuncture and remedial massages to ease the pain. Yet I was still feeling so very lost and completely alone. I had the support of my wonderful husband and family but I felt that no one really truly understood what I was going through. The mental torment was the worst part. I would try hard to put on a brave face and smile like I was fine. But I really wasn’t.
On one of the days I was stuck in bed yet again because I was completely exhausted even though I’d only just woken up an hour ago and my phone rang. It was the rheumatology dept. They had an appointment for me, it was a cancellation and they could see me tomorrow and they wanted to know if I was available. I was just about to say okay when something stopped me and I asked,
“Could you tell me who’s it with?” “ Yes!” she replied “ Its with Dr X”.
Taken aback as I knew that this was a second opinion letter that had stated a different rheumatologist, I asked if she would hold for a moment. I covered the phone and turned to my husband who was sat on the edge of the bed. “What should I do, they have an appointment with Dr X tomorrow and I have been feeling really awful this week”. My husband could see the concern and fear in my eyes. “ No, don’t take it” he said “ It won’t be any different to the last time, you need to see someone new”. I went back to the lady on the other end of the phone.. “Sorry to keep you”, I said “ But I was meant to be seeing a new rheumatologist as I have already seen Dr X and I wanted a second opinion. I hope this doesn’t offend anyone!” “ Absolutely not, many people seek second opinons.” She said. I then asked for a lady doctor and she said that it would be fine but I would have a long wait before I would be seen.
I got off the phone and even though I felt relief not to be seeing Dr X, I had my first huge panic attack in years. It was horrible.
Over the next few days, more panic attacks hit as I wondered if I had made the right decision because I was in so much pain, discomfort and exhausted all the time. Maybe I should have seen Dr X and just taken the meds and be done with all this fighting the diagnosis. I was completely broken by it all and negativity ruled the roost. My wonderful friend Kerry could see this and pointed me back in the direction of an equally wonderful lady called Maggie, whom I had already been seeing for guidance since the diagnosis. Maggie was a great listener and also had something called the e-lybra machine. It’s used by quantum medicine practitioners for personal balancing. It clears all the blockages and interferences in the energy fields of the living body, in order to regain health and wellness. Always when I came out from seeing Maggie, I felt like a weight had been lifted and I was on the right path again. I needed this more than anything right now. However, the morning I arrived for my appointment, her computer went down and so we couldn’t do a reading on me. I decided to stay anyway and just chat with her, as I really felt the need to talk to someone. We talked for two hours, which seemed to fly by. I got a lot of my chest about how I was feeling and it was only when Maggie said to me “ You want someone to tell you what to do don’t you?’, that I completely crumbled and the flood gates opened. She had hit the nail on the head, that is exactly what I wanted, more really what I needed for my sanity. “Maybe stop looking for the answers and concentrating on the negatives, start asking for what you want. Start saying positive affirmations.” she said and she was right. To help me start, she gave me a little book to write down my affirmations when they came into my head. I started to write them down straight away with her help:
I am so happy and grateful for my perfect health.
Leaving Maggie’s that morning, I felt better mentally than I had done in weeks, uplifted and positive again. Maggie had commented at the beginning that maybe the universe was interfering with her computer so we had the chance to have an in depth talk. Two minutes after I left, she text me to say her computer had come back on.
Over the next few weeks I continued to stay positive. My meeting with Maggie had helped me start my positive affirmations and my best friend Fran showed me a beautiful affirmations journal by Natalie Fox. These little books of 100 days of gratitude were the best idea for me. Everyday I would write down and say over and over, “I am so happy and grateful that my anti ccp count is negative and within normal range” and “I am so happy and grateful that my new rheumatologist DR Z is open and supportive to my situation”.
By the time the day of my appointment arrived and with the help of the naproxen, my pains were in the background. I seemed to have turned a corner. I was fairly nervous about the appointment but this time I would be turning up armed with evidence of leaking implants and an email from Dr Blais. Dr Blais is the worlds foremost expert on breast implant failure and identification and I had sent my implants over to Canada to get him to identify them as they were nameless. He had emailed me a few days prior to my appointment with the rheumatologist to say that they had been identified as NAGOR. Nagor are manufactured here in the UK at the Biosil facility in Cumbernauld, Scotland. Also, having this in writing from him, with other evidence that at the time of my implants being manufactured in 2000-2001, Biosil and Nagor were encountering regulatory problems with the British Medical Devices Agency, which I believe is now called the MHRA (Medicines and Healthcare products Regulatory Agency), it just proved I was serious about my quest. I sat in the waiting room praying that Dr X wouldn’t be there and watched as other autoimmune sufferers went into have their consultations. I was finally called in by one of Dr Z’s team. Dr B was lovely. She sat and listened to me as I explained what had been going on from beginning to end. She noted down that since having my implants removed that my hair loss, fatigue and dizziness had stopped. She never once dismissed what I said or made me feel stupid. I loved her for that. She checked over my hands and squeezed my joints. I felt nothing. I asked her to explain to me exactly what ‘joint stiffness’ was. She said that it is when your joints are very tight and you can hardly move them. I told her that I had never actually had that. I was always able to move my joints, it was the pain in the muscles, bones around them that hurt. She then asked me about swellings and I said I had very teeny tiny amount of swelling, but nothing that would even be of any significance. I then asked her to explain what she would expect to see, she replied, that it would be really noticeable , very hot and red. Like a small ball for a joint. Well that wasn’t me either. She said that she did think I still had inflammatory arthritis (which is still RA) because of my anti CCP count and that I was likely to develop RA within 5 years. So I asked if I could have another one, just to make sure nothing had changed since the implants were out. She agreed without a blink of an eye. She also wanted me to have an ultrasound of my hands and wrists to see if there was any evidence of sub clinical synovitis..basically, inflamed joints and tendons. She said if that showed up anything then we would talk further, otherwise she wouldn’t put me on methotrexate (mxt) or any other form of immune suppressant as there was no evidence of any current issue.
I could have hugged her. I was so happy, I literally skipped out of her room with joy. I didn’t have to go back on mxt!!!
It wasn’t until August that I got all the results back for the anti CCP and the ultrasound. Unfortunately it was bad news with the anti CCP, it came back higher than before, I was now on 284 (anything over 10 is classed as high). I was also hit by the fact that my rheumatoid factor (RF) was now positive, marginally at 40 (anything under 30 is normal). But RF tests can be false positives anyway, so I wasn’t too concerned about that. As for all my inflammatory markers, CRP and ESR, they came back completely normal. The ultrasound scan showed no evidence of active inflammatory arthritis at all. The results of all of this meant that I won’t see the rheumatology dept again until April 2017.
I now have 7 months to completely heal and I WILL .
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