The fourth and final instalment of the PoPSTER study and this one is using the beauty of hindsight to give an overview of how I feel about the treatments and choices I was given. If you missed the third post please click here.
Overall I am glad I tried the varied treatments but I still feel in limbo with them as for the most part the choices were made for me and they weren’t the ones living with the disease.
They were definitely worth a shot but I do wish they were all better explained to me in different formats such as written alongside the verbal explanations. I think any treatment is the right choice at any given time because until you try it you don’t know if it is the only thing between you and remission.
I think that the on and off steroid use has affected other conditions I have specifically the hypermobility. It has also increased the Body Dysmorphia I have around the way I look; as starting the steroids young warped my body image ideals due to moonface and weight gain. With the weight gain I developed an eating disorder that I battle with every damn day but as they say recovery isn’t linear.
I don’t think ultimately I would change the treatments I have had but more the way I took them. For instance if I could have used a MAR (medication administration record) to cross off as I went along I might have taken the tablets better and they may have made a difference for me. I also would have liked to have had more support emotionally and psychologically around self injecting medications or being offered a different method such as a pen.