Remicade really works for me, and I take it every 6 weeks, and at about week 5 I start feeling the need for it. However I can’t take remicade if I have had any sort of infection. Remicade works by lowering the immune system, so I need to wait 3 weeks after the passing of any sort of infection before resuming the infusions. Particularly dangerous is any sort of lung infection, TB and Bronchitis being the most worrisome.
In winter I often get a chronic hacking cough do to Acid Reflux. My cough started about 10 days ago when someone was smoking outside a building I was in, with open doors. At first I assumed it was the smoke irritation, and then the acid reflux but with my infusion pending and my cough getting worse I not only started my acid reflux meds but also got myself into the doctors just as a precaution. I am glad I did. I have post-infectious bronchitis. Luckily I am not contagious since I have been visiting another friend with a weak immune system lately. So the good news I won’t be one of those people who die from a lung infection they can’t fight because of remicade. The bad news is I can’t have my infusion and I have to take steroids.
I really hate steroids, I am already rather round and my six week dose of steroids to help me manage the remicade, keeps me nice and plump but nothing swells me up like a dose pack of prednisone. On the other hand I really, really love breathing, so I will take the steroids. Maybe the arthritis will get so bad while waiting another month or so for the Remicade that I won’t be able to dance, but I certainly can’t dance with coughing badly either.
Its just a temporary set back. I can be grateful for that. And I can be grateful I found out I had the bronchitis before I got the Remicade and wound up hospitalized with it. And I can be grateful I have accesses to modern medicines like steroids and other icky stuff, because as much as I hate them, my life would not be better without them.
Turns out I probably will only have to wait a week. The doctor will see me next Friday morning and hopefully let me have the infusion same day.
There is a lot out there on how hard it is to not just be in pain but to have invisible pain. Its worried that since our pain isn’t obvious we might not get the sympathy we deserve, that someone might expect too much from us, that we are just not understood.
I don’t see the world that way. I am glad that I can smile at a stranger who says “how are you” and say Good, and they not have any reason to question me. I am glad that in spite of every thing else I can often look at least presentable. I am glad at the ability to fake it. I don’t want people’s first thought of me to be “She’s sick”, because I don’t want illness to define me. I want to be able to choose who has the details of my personal health and not have it written all over my face. I want my friends and family to see my joy, my love and my passion before they remember I am ill. There will be obvious things I won’t be able to hide sometimes. I might have to use a cane every now and then, or the pain may be reflected in tired eyes with deep creased forehead, but even then I will try to make my smile bigger so its more noticeable than any signs of unwellness.
I have an illness, I am not my illness.
Woke with a migraine but gone on it quickly and within two hours was able to manage a drive to the San Diego Airport. The rough part was the excruciating pain in my teeth and jaw. I took an alleve on top of the excedrine I had already taken. Half way to the airport I took another. If feels like someone has taken a railroad nail and nailed it into my jaw. The pain is spreading all the way to the back of my head. I am glad I get to be a passenger on the way home. If I felt any better I might be able to feel sorry for myself but the pain isn’t letting me focus on anything but pain.
I have been experiencing severe tooth pain for several months now. I mentioned it to my dentist who examed my tooth and said it was fine. I went back a month later, and told him the pain was now excruciating, and he said I pointed out a different tooth. Many of my teeth seemed sensitive in the test but since it was waking me up from sleep and the pain was lasting hours to days he called in another dentist and they agreed the root was compromised and started a root canal. I go back in two weeks to finish it. In the meantime not only is that tooth still sensitive, but so are most my bottom teeth, especially the ones in front. My arthritis is so painful in my jaw that I started to wonder if maybe the pain was caused by the psoriatic arthritis. I would like to know before I get any more root canals. Of course its a new symptom and it could be my medicine as well. I can’t seem to find that it is an official symptom,but my most common symptoms are not textbook. I have found a lot of chat room post about people with PsA having tooth pain. Thought I would put it out there to see if anyone has any feedback.