Today I get my remicade infusion. I am at the doctors now and I will be here the next 4-7 hours. I have an allergic reaction to the remicade so they pump me full of antihistamines and steroids.
I also had to take steroids for bronchitis last week and I feel swollen up like a puffy balloon.
The pain that mimics a heart attack started 3 days ago, so my body is ready for the infusion. I just wish I could get it without steroids. I would rather be fat with less pain than less fat with more pain. (Thin is something I don’t even worry about, not going to happen).
In a few days I will be back to hiking and Dancing that’s to Remicade and these nurses here taking care of me.
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.
I remember when I first started the Remicade, within my first two infusions I started losing my hair. I told my doctor who thought it was probably something else, do to hair loss not being one of the listed side effects. Then I started researching online and found that others had experienced hairloss and that hair loss up to 1/3 seemed to be the norm, and not rare at all. More rare was more extreme hairloss, and in a case or two it seemed to cause total baldness.
I am lucky, born with a huge think mane of hair, I had plenty to lose. After the first few months my hair loss seemed to stop, but in the last couple of months I have lost a lot more. I bet I have lost at least half my hair. My hair dresser has noticed as well. In my case my hair now lays smoother and dries hours quicker, so I can’t say I am suffering for it. But I am concerned for those with less hair who might have the stress of hair loss now adding to their ills.
Remicade is relatively new and there aren’t a huge group of people who have used it more than a few years so long term side effects aren’t even reported yet. Don’t get me wrong if the hair loss continues I probably won’t give up Remicade as it really seems to make a difference in my health, pain and lifestyle. Besides I can rock hats, they add a certain flair. I did want to share this issue with others though who might be considering Remicade, or experiencing the hair loss. Maybe if enough of us share our stories they will add it as a side effect.
Time to go paint. Losing some hair is worth the price of being able to use my hands to create!
If you know anything about my pain scale you know feeling blue is about as good as it gets!! While I was in Florida I had a bad string of migraines but after they faded I have been on an upswing. I am without a doubt that the Remicade has changed my life for the better. I am still achy and limping for a couple hours in the morning and I still get occasional heart attack like chest pain and have rough days, but I am feeling better physically than I have in years. In early July I started Salsa dancing, and often just could manage part of the beginning lesson, but now I am taking several lessons a week and able to stay an hour or two for social dancing afterwards. I feel blessed with a new vitality. I am listening well to my body when it tells me to slow down and take a rest for an hour or two, and find that in return my days have many more hours in them and I can be more productive.
I just want to remind others with chronic illnesses to not give up. Keep trying things until something works for you. This blue period I am going through might not last forever but if it doesn’t it will serve to remind me to keep trying to live my life to the fullest and to find medical and health treatments that improve my life.
Well I have been through some stressful times since I last wrote but oddly enough even through those times my health has been on an upswing. Last month I took myself on a mind healing road trip to another state and my body didn’t rebel. It fact it seemed to flourish in the desert heat and I found lots of quiet time without daily distractions and finished my two best paintings to date. I also have started dancing again. I was unable to find swing locally so I have taken up Salsa and dance on the nights I am feeling my best. Often a night out dancing means I go for an 8 pm class and am home in bed by 9:30 but it feels so good to go out and be active and even make new friends. As I am feeling better and have some free time on my hands I have been spending more time with a friend who isn’t doing as well and that has been so emotionally healing for both of us that I don’t know how we managed without it. Those moments are also physically healing because we often watch TV together which gives me the down time I am often so reluctant to allow myself although I desperately need hours of it all day to avoid severe flare ups. I just wanted to blog to say I am feeling good. Living with Psa doesn’t have to mean not having a life. This week I am in Florida and is very wet here. Historically my body tends to hate the damp so wish me luck.
I have been feeling well but I haven’t been sleeping well. Most nights lately I am getting 2-4 hours of sleep and usually with my condition I need about 8 to make it through the next day. My health has been holding steady in spite of it, but I am starting to fear a big crashing flare up. I have Remicade on Monday and I am sure I will sleep then, as the meds put me out for the most part of 24 hours. Not sure what is keeping me from sleep, some migraines yes, but also an unsettled feeling of something just not being right, maybe exasperated by the early symptoms of menopause.
Still life is good, my healthy streak is holding, and feeling loved by good friends lately. Thank you universe for a great weekend at the gallery and a lovely visit with distant counsins and from out of town and family and support and love found in unexpected places.
Well it seems like the remicade is working, but I have been having such a flare up its leaving me a bit beat up and depressed. I am dreaming of the days I used to hike a few times a week. Just small hikes, under three miles all, but manageable, even on pain days. These days, driving to work, and walking out the door seem almost more pain wise than a person should be able to handle. At the same time the migraines are also hitting me nearly daily again, giving more credence to the theory that they are both related.
I know my weight isn’t helping the pain, no one in pain needs to carry around an extra 50 lbs, but pain doesn’t help me manage a compulsive eating disorder either. It was easy to hide an eating disorder when my days consisted of 5 to 7 hours of physical activity every day, but now when getting dressed in the morning takes half my energy for the day, exercise seems like a luxury I may never have again. I actually feel like I am mostly in control of the eating issues lately, as many meals out I split, and I have mostly avoided mindless empty calorie snacking, and make better dietary choices for the most part. I bring up the eating disorder because I know I am at risk from just moving from one to the other. When I see myself in the mirror lately, my first thought is I have to start purging. How else can I get this weight off? I have tried expensive diet plans in the past, and just self control and they just leave me depressed and any weight I lose gets put right back on as soon as I have to take steroids. The dietary lifestyle choices I have made obviously aren’t enough. I know bulimia isn’t an answer to anything, but its something I have struggled on and off with when I get very stressed out in the past. Maybe its just a way to have control somehow over something. Amazingly enough I seem to have lost my appetite for the first time in my life these past few days, so maybe that will all take care of itself with some luck.
I have been trying to manage the pain and depression productively. Painting it out like I do migraines, and oddly enough losing myself in data entry with the books for work seems to give me someplace to focus except for the pain. I have been taking Aleve daily, and I am grateful my doctor doesn’t through pain pills at the arthritis because I would be tempted to numb my mind and take them. I have some friends who smoke or eat pot for pain who have been trying to convince me. But I don’t think I can every get over my issues with pot. I have seen it ruin too many peoples lives and destroy all their ambition. I know taking it for pain is different,and I am all for legalizing it for any purpose, but I have have a repulsion towards it I don’t think I can get over.
On the plus side my paintings have taken a more creative expressive turn. Are they any good? It’s nearly impossible for an artist to see these things objectively, especially when they are new borns. But they are good for me, pure expression and something to focus on besides pain.