Today is a very, very bad day. I took my last Sulfasalazine tablets two days ago. (It’s meant to be four a day.) My stomach has been BAD. It’s like a terrible IBS flare up but with heartburn since last week, and trapped liquid since Sunday. I can feel and hear the liquid in my abdomen. It’s been miserable. Sulfasalazine has been known to “tear up” people’s stomachs so much that they stop it and are put on a different medication. (I wish the patients who mention this would be more descriptive. Is what I’m experiencing what they have experienced?) As I said before, the rheumatologist said nothing about expected or common side effects so I don’t know if this is it, or the HRT. Yeah, the gynae ALSO didn’t tell me anything. All she said the first time I went to her was that if tests show I’m menopausal, she can start me on HRT. She handed me pamphlets on specific HRT meds (None of which are the one she put me on!) and the pamphlets really were about reasons to go on HRT (Reduce osteoporosis, heart attack risk, hot flashes etc) and how low the increased cancer risk is.
But again, google says it can cause digestive issues. Whatever that means.
I went off the sulfasalazine first instead of the HRT because more AS patients mention the stomach problems than do menopausal women. Autumn is here, and my joints are screaming. They were crying when autumn crept in, but today, they are SCREAMING! My sternum is aching, my knees, fingers, feet… I am in a terrible place. I’d say on a scale of 1-10 I’m at an eight. The pain and fatigue are incredible. I wish I could press the weight of what I’m feeling on you (If you’ve never experienced it) so you could understand how much of a loving mom I am to still keep smiling and talking and hugging my children. If I could, I’d put myself in a quiet hospital where no nurse will come at night and ask to be sedated till this is over.
And my stomach issues are still not perfect. But I can’t handle today. Yes, the sulfasalzine has only reduced my suffering from AS, and I am only ASSUMING that not having any since yesterday is the reason why things are so awful today. Maybe they would be ANYWAY! But I’m back on it for now.
I wish there was a way to see inside my body and figure out what is causing my digestive system to be so miserable. I wish there was a cure for AS and all the other problems I have.
I wish I was ok.
Going to see if I have any prednisone left. It’s that bad. And taking prednisone in the afternoon is a recipe for lack of sleep tonight. But, I can’t take this. I hope to return with something more entertaining or edifying or educational. But for any other chronic pain sufferers experiencing a terrible flare up and out of ‘spoons,’ I feel you. No amount of faith takes the pain away. It just helps us to live it with grace.
They said I should write a book 