Life trundles along in my household, Autumn is here, Christmas is coming as is a beautiful bundle of joy – in the shape of an eight week old red head Mini smooth dachshund puppy who we are calling Livia (my ‘other’ baby name), not that she is a baby replacement, no, nope, not me, not at all – read; absolutely totally but I draw the line at kissing on the mouth. In relation to the puppy not my daughter obvs.
Anyway, so, once upon a time about 12 years ago during a very random all encompassing blood test it turned out that there was something seriously wrong with my liver, and noooooo, it was not alcohol related! It took the various Drs and Consultants a few years to work out what to do with me and then we had nice long chat about liver transplants and how they worked. I was eventually diagnosed with Autoimmune Hepatitis, which is a type of Autoimmune disease, its is non contractual, it is non contagious, it simply means that your body attacks itself. They don’t know why people have it, it just is.
Essentially my own body was rejecting my own liver and destroying it, I was very unwell and all options were being considered. But now that I finally had a diagnosis the first step was to start taking the same drugs that transplants patients take with a view to fooling my body into accepting my liver. This works by essentially removing your immune system so your body accepts the new organ but it also means that you are very susceptible to other illnesses – I caught chicken pox during my law finals! And so to try and avoid being put on the list for an actual liver transplant there were three drugs to try as the last ditch attempt to right the wrong. Like Goldilocks, the first lot didn’t work, the second lot worked fantastically but the long term side effects were a bit horrid and so onto medication number three (a combination of two) which fit just right and that is what I have been taking for many years. I have remained in remission ever since but it is not ideal to remain on them long term so the aim has always been to stabilise my disease and then wean off the more harmful of the dual medications. The medication itself is a wonder drug but taking it can make you feel just awful and weaning off it makes you feel awful too but I managed it and all was well.
Finally in June this year, after 10 whole years, I became successfully functioning without one of the medications which in itself had left me with a whole other illness caused by the side effects but I remained in remission without the meds which was the main thing.
But, my excessive tiredness, the nausea, the stomach cramps, constantly feeling like I’ve been hit in the stomach, the big fat red painful hot lesions on my legs and arms, the pain in my elbows, wrists, knees (and toes, knees and toes), the sore throat, the dry eyes, the swollen tummy, have all been explained by my latest routine blood test results. I am coming out of remission and am starting to become unwell again.
I am surprised but not but not shocked. Though I was a little disappointed, I hate having to actively think of myself as ‘poorly’ and to have to adhere to and admit that I have actual physical limitations – damn silly unreliable body, not really! My body has been very good to me so far.
This is now complicated by the fact that the painful joints are probably another autoimmune disease that never made itself apparent because I was taking the medication that held it at bay and as soon as I weaned off those meds the illness made itself apparent. So, today I was having an appointment with a new consultant at a whole new department in a whole new hospital, in a few weeks time I see my usual consultant for my liver disease at an entirely different hosiptal and we will all try and come up with a plan. I dread going back on the meds, they have very unpleasant side effects but the alternative is not an option. However, none of this will happen before I have had all the blood tests imaginable, chest X-rays, feet X-rays, hand X-rays and further a referral to another consultant and some biopsies of my lumps and bumps. It seems a daunting road ahead and one I felt I had reached the end of but here I am at what feels like the beginning again, like I have landed on the snake in a game of Snakes and Ladders. But I will do what is necessary to remain as well as I can, lots of rest, lots of tea and lots of knitting for the new addition to the family.