Two days after my surgery I had been booked into have a blood test to check my liver and kidney functions as I was supposed to still be taking methotrexate (mxt). However, as we all know I had rebelled the advice of the ‘experts’ and not taken the stuff for many weeks. I could’t seek the advice of my GP as it was her day off, so I decided to call the rheumatology nurses to find out if I really needed to have the test done. They agreed with me that it would be a pointless exercise. Whilst I had her on the phone, I wanted to discuss the appointment I had booked in with them the following Monday. This was to be taught how to use the injectable version of mxt. I told her that because I hadn’t had a ‘flare up’ since I came off it 6 weeks ago, I didn’t see the point of going back on a drug that I didn’t really feel I needed and I would rather my appointment went to someone else that really needed it. She completely understood. However, she advised me that it can be very common to come off mxt and then after about 4 months get a huge flare up. I listened and took in what she said, but told her it was a risk I was willing to take. I didn’t want to go back into more brainfog and sickness when I was just starting to feel human and alive again. Also, my poor body has been through so much over the last few months, mxt, antibiotics and steroids, virus’s, chest infections, the mental strain of everything, emotional breakdowns and to finish off, an operation.. Sod that . Thanks but no thanks, I think I will give myself a well deserved break.
However, because I had been ‘lost in the system’ along the way and they had never met me or had any idea about my symptoms or my background, she said it would still be beneficial for me to come in and see them. She then dropped in that Dr X would be around that day and they would go and ask his advice upon the situation. To this wonderful piece of news, I burst out laughing down the phone and said “ I am sorry but we just don’t see eye to eye. He will just say I have to go back on the MXT or he will be incredibly dismissive and say “she can do what she wants”, its pointless.” I decided to tell her that I was also seeking a second opinion and waiting to speak with my GP regarding this matter. She still wanted me to come in and I didn’t see any harm in doing so. I also knew I had back up in the Husband… he would be taking me as I couldn’t drive!
The day after speaking to the rheumy department, my GP called me back. She was just so lovely on the phone and really made me feel like I was in control of me. It was such a welcomed feeling after the months of being dismissed. We agreed to wait and see what the rheumy team said on Monday before she went ahead and requested a second opinon. She also agreed that it would be mad to go back on a drug that made me feel so rotten when I was feeling so good and that my body needed a break.
I had happy tears in my eyes when I got off the phone, I finally had an allie.
Soon enough Monday was here and it was time to go back to the rheumatology department. I wasn’t looking forward to it as I was sure they would be trying to persuade me to stay on the drugs. This always unnerved me as the same ol’ chestnut would be swimming around.. my gut telling me don’t do it and my head still saying, “yeah but what if you really need the drugs so the disease doesn’t progress”. We were told to have a seat in the waiting room and we had to sit right outside Dr X’s office! And there he was in all his glory, on a poster stuck on the wall in front of me. He was doing a charity bike ride from London to Paris to raise money for an autoimmune condition. This is obviously very nice of him but I just wanted to draw a bad moustache on his rosy face and a great big willy out of his head! But that would be incredibly childish and also not a good example to my kids that had come along to support me. I could feel my body getting tense and nervous at the thought of seeing this guy. Praying to the universe that he was deep in paperwork and not to show his face, I sat and waited patiently. It was the longest 10 minutes of my life and I think I ran into her room when she called me in. However as I sat down and made myself comfortable I could see on the table in front of me all the parifinalia of injectable pens of methotrexate and one of those bright yellow hazaradous bins that used needles go into. No one had told her of the phone call. SHIT SHIT SHIT!!!
Luckily I had actually spoken to her in the past on the phone and she remembered me, but she wasn’t the rheumy nurse I had spoken to the other day. It was her first day back from holiday and no one had filled her in on my phone call last week. So I quickly explained that I hadn’t taken MXT for 7 weeks now and that I had never felt better. I told her about my operation, about what my poor body has been through and how I just wanted to give it time. She agreed with me. SHE. AGREED. WITH. ME. We went through all my bloods, as always, no sign of inflammation on any of the markers, CRP or ESP over the past few months. The only sign was the Anti CCP count. She went to check that it couldn’t be raised for anyother reason. When she returned she recounted what the other rheumy nurse had said, it would only be raised for RA, that it was a marker to show that I may have a more aggressive form of RA. She told me that there could be a chance of a flare up again but she also said, it may never show up at all. We both reached for the desk and touched wood at that point. We agreed that because I just didn’t feel the need to take the drugs right now, that she would discharge me. If I had a flare up, I would see my GP, they would refer me again and I would then accept and start all over again. She told me my appointment I had scheduled with Dr X would be cancelled in September.
I don’t think I have ever thanked anyone so much in my life. I could have literally danced out of the hospital that afternoon. I was walking on air. Happiness truly is the most wonderful feeling.
At last, my reset button had been pressed.
Click here to find out what happened next…. xx