It's been a while and I shall explain why. Over the past few months I have been undergoing a medication change because the ones I was originally taking just weren't doing their job properly and I was beginning to suffer on a big scale. So after a trip to the Rheumatologist and GP after GP it was decided that I needed to begin cytotoxic therapy in order to keep the disease in check. So I have begun the journey into the land of chemo and it has not been a fun ride.
Anything with the word Biohazard in it has got to be good for you...right?
When I started on this journey of Lupus enlightenment I didn't realize that many drugs that are given to us as treatment are actually used for multiple diseases. Hydroxychloriquine is an anti malarial for example....weird I know.....and some of the drugs used to help us are chemotherapy based. Methotrexate, which is the most commonly prescribed cytotoxic drug, is in fact chemotherapy and often used to treat cancers such as breast cancer for example. Now I know this is all a little depressing, but sometimes the truth has to be told and faced head on...such is life.
There are in fact many cytotoxic drugs used to treat a range of autoimmune disorders from some that are given intravenously and some that you take in tablet form. Me...well I am on a mixture of tablets and injections at present which seems to be working quite well. What I have found hard to cope with will be next on this list!
I do not feel good......no I do not!
As you can guess, this type of drug is not fun at all. Ok, it will depend which drug you are on, what dosage you are on and how you personal react to the drug. Not everyone will feel the way I do, so please if you are starting a plan like this ask for the side effects and all the information before you begin....they should provide all this anyway.
So that is how it began...one heck of a scary form to read through and sign. The list of side effects and things I cannot do was seemingly endless...mouth ulcers, vomiting, hair loss (not complete we hope), weight loss or gain, dizziness, upset tummy, joint aches, headaches, blurred vision, liver damage, immune suppression to the tenth degree.....and that is only the beginning of the list. Along with all the side effects she went through all the things I can no longer do or enjoy....a glass of wine will make me vomit, so that is Friday nights out the window....if I get chest pain it could mean a nasty lung inflammation....brilliant...if I go yellow stop taking the drugs...if I go yellow I will be doing more than stopping the drugs me thinks!
That was not that long ago now and I have started the treatment and it has been a weird old ride to get to the point of writing this to you. The first few doses did very little than make me feel sick and/or be sick...which is easy to handle. Now however the dosage has risen and that is when all hell has been let loose.
This weekend has been the first time I have had to succumb to the overwhelming uncomfortable, mouth burning, headache creating tablets. Saturday I woke up and felt a little off, my head was a little distant, my body ached a little more than usual and when I tried to stand up my brain felt like it had melted. Now, this is nothing new really and I shrugged it off as the beginning of a cold and drank plenty of lemon water. However, by Saturday night, my mouth had exploded into a bleeding mess of ulcers! What is going on? My throat was sore, my legs ached like they were being pulled out of their sockets and the worst of the worst was the headache........migraines have nothing on that raging beast!
So Saturday night was a bit of a write off..OK no problem...wake up refreshed on Sunday right? WRONG, so very very wrong. Sunday I felt like I had been hit by a car and as someone that has been hit by a car that is no exaggeration. My entire body ached worse than from the lupus, my mouth was so burnt that I could barely swallow and my head....well the pain was off the scale. You know me, I don't gibe in, I don't let it win.....Sunday it won! I didn't even have the energy to get dressed. I had to have help getting into the shower, help getting dried, help getting back into my PJ's....so embarrassing and degrading! I spent the entire day on the sofa, half awake, half in a different world. I felt like crying but I was too ill to have the energy to cry. It was the worse day I have had in a long long long time!
So what can I do? Well I do what we all do. I keep on keeping on. I get up, get dressed and fight like hell. I have ice lollies for the mouth burns, fresh fruit for the coughs and colds that are never ending, hot water bottles for the pain. I have my TV shows, films, knitting, painting...I have this blog to get back on track to distract me. I have the love from those around me and the help when it's needed.And most of all I have my smile!
