And this is just the beginning of the Journey into UCTD

I had meant to write about the next stage of my Journey through UCTD jungle the very next day. This is the month of Lupus awareness and since I have some symptoms of Lupus I decided to get most of the journey so far, down in the blog. But one thing I have learnt, in the last 7 years, is that planning, while a good idea can be futile when some symptom decides to make a break for it from the tight leash of drugs. That’s exactly what happened the next morning. One of the wild card that gets played by UCTD is fatigue. It comes out of the blue and hits you like a truck train. I, very happily, bounced out of the bed with a fair idea that being the day for Methotrexate I was bound to be tired later in the day. However, I was not prepared for that massive diffusion of energy that occurred. I sat down with a cup of tea and literally felt the energy drain out like air from a tyre.

Now that put paid to any plans of writing, exercising, housework and cooking that I had for the next 2 days. Third day, I managed to do grocery shopping and cooking dinner. Today, I finally feel up to thinking, which I know you will agree is important to writing. I left the journey in mylast blog at taking anti-inflammatory drugs both none steroidal and a short burst of steroids (courtesy of my GP). I realised that by now I had visited the rheumatologist 3 times and all I got was a glance in my direction, a quick question as to how I was doing and a repeat prescription of more ibuprofen.

I realised that this was not at all what I expected from a specialist. I felt that I had been so focused on the severe pain in bones, muscles and joints that I could not actually think and effectively communicate my problems and needs during my consultation. I had been mechanically going for the umpteen blood tests which were rarely explained to me – neither the reasons nor the results. The single thing I was told was, we are going to leave the diagnosis as polyarthritis as we do not wish to label you with anything just yet. It was a major effort to get to the hospital, my husband had to take time off to drive me there, and then sit long past the appointment time as the clinic was always very busy. If you think that hospital chairs are good, try sitting in one when every bit of you hurts and find out what hell it is. It was most annoying that my visit itself lasted about 5 minutes and that I did not even get more than a cursory glance. In UK, you generally get referred to the local or nearest affiliated hospital for specialist care. Now-a-days one can ask to see another specialist for a second opinion. But it never even occurred to me to demand another doctor.

It dawned on me that I was taking on the ‘patient role’ as it was difficult to think and to be proactive and participate in my own care. I was accepting what was happening and being passive in my care. I think it was easier to just be and plod on, one foot in front of the other. Work was getting harder, especially when I had to drive in. All my modules were distance learning and all tutorial support was delivered online. This meant a fair amount of typing and was very taxing to my already swollen hands. Well then something snapped and I thought what is this? Why can I not get proper answers or indeed even a tentative diagnosis? What are all these blood tests telling?

So far my husband had been supportive but never accompanied me into the consultations. So I sat down with him and talked over the issues that I felt were important to my care. I wanted to know what the blood tests were and their results? Why was it that I had not been given any physical examination ever? I did not appreciate being treated like an ignorant individual who was just meant to follow directions blindly. I wanted to know what to expect in the short and long term. Yes, the list was long and we both agreed that these issues had to be addressed. It also did not help that after the first 2 visits with the consultant, I was seeing other members of his team and getting a different person every visit was not good for continuity of care. This time I asked my husband to come into the consultation with me and ensure all our concerns were aired by me. He was to remind me if I forgot anything or even speak for me if I got ‘stupid’ again.

I did manage to be assertive this time round. Indeed I asked the senior registrar if they had stopped teaching physical examination in medical school. I pointed out that as a health care educator I was used to teaching my students physical examination for symptoms like inflamed joints – looking at it for swelling and was it red, touch to see if it was hot and also take the joint through its range of movement to see what was the limitation. This time he actually carried out examination of all the joints and identified that the symptoms were indeed severe. Then he stated that they had been testing me for various autoimmune diseases like rheumatoid arthritis and Lupus, also checking for thalassemia. My hormones were showing that I was starting menopause, which can contribute to aching muscles and joints. He wanted to know where my x-rays of hands and feet were. I said you have never ordered any! He advised me to be patient as mostly these symptoms take time to evolve into a specific disease.

 Well that visit I got myself x-rayed and had more information. It certainly helped to have my husband accompany me as he remembered more of what was explained and also understood better what was happening to me. Well there was certainly a lot to think about. I had increasingly become allergic to more and more foods and cosmetics and various things, so the idea of autoimmune disease did not come as a tremendous shock. The x-rays showed hot spots (arthritic changes) on both the wrists and a little less on the feet. So back home with more ibuprofen and a little more information than before and a decision to try and find out more about autoimmune issues.