I have had a lot of messages lately about my health, asking what is wrong and how things are going. I don’t usually put much information out about my health, but as I improve I want to try to at least stop even one person going through what I have.
It has been over three years since I got hit by this rare immune condition. I have not been able to eat solid food since my health began to slowly decline. It has taken this long to get to the root cause of what is happening to my body. I finally appear to have answers since I am responding to a mixture of steroids and immunosuppressants. Recently I began to consider the possibility of withdrawing from all treatment, since it is very harsh and stops me from being out and about much due to risk of infection along with many other side effects. I felt I had no quality of life and I have not visibly seen any improvement in my health as yet. My last hospital trip seemed very disappointing as my consultant wasn’t in the hospital and we made a trip that took over twenty-four hours to get there and be seen. I was in bits. We pushed hard and I had some tests done. I have now been told that after all these years my inflammatory markers in my blood are declining. I still have one which is very high but they are going in the right direction. I am still experiencing blood loss and in turn low iron (my diet does not help but until certain areas can heal I can’t change this) and need to go to London for IV iron as my GP refuses to give me the injection locally (cost politics apparently, same reason they won’t prescribe me meal replacement drinks to help, but that’s for a different day) This is the first sign of improvement. I have been told that it will take a long time to get to any sort of normality (with the drug I’m on they expect around fifteen months to be on some sort of even keel and it has so far been six) and I still have tough times ahead but one thing I now have is HOPE. I was planning my next birthday as my last since I knew my body wouldn’t take much more of the situation I am in now and I honestly accepted what I believed would happen and thought I’d just live as best I could with the time I had. But now I can plan to celebrate because there is a significant chance now that I will be ALIVE. I still have to have regular tests as my medicine affects kidneys and liver, is a known carcinogenic and is quite toxic when used in high doses, but so far fingers crossed my body has tolerated it as well as I could wish for.
I will most likely talk more in depth about what I have once I am further along the path to recovery. I want people to know that even having something rare you CAN defy the odds. I want to share information about how I managed to finally get to see the right specialist with this specific condition and want to help people avoid any of the time consuming mistakes I made. I did not get to this specialist through being sent by the NHS. I had to save, spend a lot on private doctors to even be believed (I was placed into a psychiatric ward as the doctors at my local A&E thought my choking episodes were mental illness related, this was without checking thoroughly for other causes) and spend hours researching on the internet (which can be tricky so please be careful you check credentials of any doctors if you do this). I will explain what I have learned about how the system works and how you can best make it work for you. It is possible to get another chance. And that is what I hope to achieve and can finally see happening for me.
Thank you so much to everyone who has asked how I am, even if I haven’t been able to reply you’ve still been checking on me, supporting me, uplifting me, sending me things to brighten my day, and generally made me want to make that fight to get up in the morning. Through the worst days you have made it possible for me to carry on. So much love for you all xx