Remicade Oh Remicade

Wow sorry I didn't realize how long it had been since I blogged! Why's that you ask? I have been given my life back!
Yes remicade is working for me. This is the best biologic I have ever been on. It kicked in faster and has worked better than any biologic I have been on before.
So forgive me for not posting, but I have been busy living life.
While I still have to watch to not overdue things I can actually do things. I am always a positive person and put a very positive spin on things, but the year I was on actemra was a really rough one. On a regular day I was lucky if I could make it from my bed to the couch to at least sit with the family. I also gained back all the weight I had lost previously, my cholesterol was rapidly increasing and I just felt like a blob. So that's all over now so lets forget about it!
This summer alone I have drove through 2 states 4 times, we went to DISNEYLAND!!! My oldest got married! I was able to participate in all of this!
So things have been good. I just wanted to do a quick post on why I haven't been around and will be back soon with more informative posts again.
Thank you all again for stopping by.

Changes

Time for a change. Well Actemra was not my drug, thankfully my Dr agrees. My blood tests have not been improving and actemra was increasing my cholesterol levels, so done with that.

Changes...now I will be starting remicade. I have high hopes for remicade. I am going into this with only positive thoughts and will not be reading up on it or learning about any of the side effects. I am sure this may seem silly and superstitious but with only a handful of options left I am ready to start carrying a 4 leaf clover and a rabbits foot or any other good luck charm you think will help.

The only reason I have not wanted to try remicade before now is the infusion time. As I have said before my infusion room sucks and has no art, no decor, uncomfortable seats, and no family members allowed in the room. Remicade takes at the minimum 2 hours to infuse the first appt will be more like 3.

Like I said I am going into this one with high hopes, positive energy, and many prayers. This will be the right medication for me, it will work longer and better than any others have so far. I do like that you start at every 8 weeks instead of monthly, but this can be increased if needed.

Right now I still haven't been able to take any of my medications in 3 weeks because I was sick. So I missed an infusion and 3 shots. I have found the positive in this forced break...I am getting a tattoo tomorrow. My Dr said no tattoos while I am on the chemos so now I am off I'm taking advantage. I can't wait I have been wanting another one for a long time now so I am more than ready.

Well a short blog for now. Without having any meds my hands aren't liking typing much.
I hope everyone is having a great day. Thank you for stopping by my blog.

One silly cold and a lot of pain

I used to be one of those people that could work through a cold, work with broken bones, work when I was unable to walk. Now a little cold makes me unable to walk, ok not completely but it sends my pain sky high and makes walking very hard.

This is not a bad cold, I'm congested in my head and that's about all so far. A cold mixed with an autoimmune disease though is completely different than just a little cold...in fact I don't get just a little anything anymore. 

What happens when you get sick is your immune system goes to work trying to fight off the virus or infection. With Rheumatoid Arthritis you immune system is wacky and attacks healthy tissue, joints, organs, even skin...it sees your body as a virus it must kill off. So for me when I get a little cold my immune system kicks up to full gear and attacks my tissue, joints, organs and skin. This puts me in a full flare.  

I can not get around well and need help with even the simplest things. Last night my husband had to help me walk to the bathroom, in the middle of the night, completely naked. It's a very short distance from our bed to our bathroom, but I couldn't even make that short distance. I had to wake him up to help me. 

There is even more fun to my little colds now, because I am on the chemos to fight the RA my little cold can now last anywhere from a week to a month, sometimes even longer. 

So this little cold is why I haven't been around much online. I have a wonderful friends wedding to attend tomorrow and this cold won't keep me from making it, being there for her special day is more important than my silly cold. 

Thank you again for stopping by. I hope everyone has a wonderful day. 

This was written on Friday Jan 31st but as I forgot to post you're all reading this a bit late. 

Infusion day

I started this at the beginning of the month, but never got a chance to finish. Between being knocked flat from my infusion then overdoing it after having a couple of good days etc etc, but I'm here now finishing my post. 

I had my infusion at the beginning of the month. I take two major medication an infusion once a month and an injection once a week, then there are several medications to counter the side effects of these because they are chemos, plus pain management medications and supplements.This was the first time I was actually nervous that I had not drank enough water in the few days leading up to my infusion. I am a wateraholic I drink close to 100 ounces a day, but I had been so fevered and feeling so poorly I was barely drinking or eating anything. I know how hard it is to get a good vein when someone is not hydrated well enough so I was very nervous, which of course doesn't help find a vein either. 

Johnathan, one of my regular nurses was looking at my veins and was surprised to see they weren't as plump as normal, but was sure he could get the vein with only one poke still. Thank heavens he was right. He and I always chat a lot during my infusion, he is younger than me, but we are much closer in age than most of the other patients in there. I think most younger patients must choose injections or something, but if you looked in on my infusion room you might believe the horrible myth that arthritis is an old persons disease. The conversation of the day of course was water consumption and how important hydration is. He knows I am usually really good on water so we were laughing a bit at my expense. He was telling me about a patient that had shared with him he had been poked 15 times in one sitting because they couldn't find a vein, there is no way I would sit there through that, please just go home and drink some water and come back! 

I did have an experience of a nurse who is known for always getting peoples veins with only one poke, but the techniques she uses to achieve this status are nothing shirt of torture. It was a rare occasion for me, honestly I hope once in a lifetime, the tube just wouldn't thread in my vein. So she kept digging and digging to get it to thread, I finally said please just try somewhere else I couldn't take anymore. I had a huge bruise and was very sensitive for a while, the bruise seems to have stuck around like a dark brown scar. Infusions are not always plesant...ok honestly they are never plesant. 

I do notice a big difference between the men and women in my infusion room. For the first time I had all men in the infusion room with me. I was noticing how quiet the room was and realized part of the reason was there was not the normal chatty women who will strike a conversation up about anything. The other thing I noticed is the men seem almost stoic to me, these were all older gentleman, and one was sitting there no book, no phone, no crosswork, suduko, or word search puzzle, no magazine, nothing and was just sitting there quietly the entire time I was there. He didn't recline in the chair to be comfortable he didn't really even lean into the chair he just sat their looking stoic to me. I wondered if there were more to our infusion room would he have made the choice to have some form of entertainment? Is this his first treatment and he didn't know to bring anything. I should also say he was on a medication that takes 2 1/2 hours to infuse. It was just a large difference from the norm for me. 

I know that our medications are horribly expensive and I know that the drug companies are making a great profit from us, I sure wish they would use some of their profit to make our infusion rooms more plesant. They put out a lot in marketing to get us all to take their drugs, you know those horrible commercials where they show if you take their medication you'll be able to go play sports, squeeze fresh orange juice, or play tug of war with your dog. I'm here to tell you the majority of us will never do these things again, the medications help us live half of the life we used to have and I am thankful for that, but I would really like more honesty in their ads...ok maybe I should save that for another post I could go on and on. 

What I would love to see is some of that marketing money or the profit to come back to the patient in the way of sprucing up our infusion rooms. I don't think I have ever seen a fantastic infusion room for an arthritis patient unless they share it with cancer patients. Mine is so drab and boring, no pictures on the wall nothing cheery about it, old school IV poles with no monitors on them only the old dials to get the correct drip rate. No entertainment except for a book exchange shelf they finally got us. No snacks or blankets, no family allowed in with us. The last part is something that bothers me the most and is not true of all arthritis patient infusion rooms, but mine allows no one to be in there with us. No one to comfort us, no one to just be there with us. Upgrading to an infusion is a scary thing, going in for an infusion is a scary thing. My husband comes to every appointment with me and sits in the waiting room and just waits for me, in an uncomfortable chair and he never complains. He is so amazing, heck last year I had to schedule my infusion on his birthday and he never complained he just waited patiently for me to be done so he can drive me home safely and take care of me after I'm done. Sorry ladies he's taken, I am the luckiest woman in the world to have him, even luckier that he chose me. I really can't thank him enough for all he does for me, my girls too I am so blessed. 

As a last thought I don't think that a television in our infusion room would be a good idea, but how much would it cost to have a couple of portable DVD players and a small selection of DVDs, more up to date and more interesting magazines, some puzzle books and please a few nature scenes in frames on the wall. 

Thanks for taking the time to stop by. Have a great day.