Here we go


So I am a slacker blogger as of late…I am sorry!  I got back from Cali and got super sick- a cold turned sinus infection turned bronchitis.  Two rounds of antibiotics later and I’m slowly on the mend.

Isn’t being sick on immuno-suppressant medication SO. MUCH. FUN?  Not only can my body turn a piddly little cold into not one BUT TWO other illnesses but then the cold and two other illnesses decide to grab beers, play trivia, get more beers, play some darts, do some shots, hit the dance floor and just in general take their sweet time in leaving me.

Geez,  Walk of shame it away already!

Anyways, I’m in the midst of regrouping, refocusing on the diet and starting in on the next plan.

Funny story before I tell you the plan.  I was cleaning and organizing my hall closet the other night.  I went to get something out of the other closet and when my socked feet hit the hardwood floors, I fell hard.  I was not close enough to grab on to anything except that I was close enough to the ottoman that I drug my nose down the side of it the whole way down.


After assessing that my nose was NOT bleeding and  that I did not have visible ottoman burn, I slowly sat up and examined my hip, knees, and hands.  I was sore, yes, but nothing seemed wrong beyond that.

Falling with RA is always an issue.  Falling for me, since I’ve been flaring constantly since April, has been a fear for months.  A major fear.  I just don’t feel as physically strong as I was a year ago.  In fact, I haven’t felt this weak since I was initially diagnosed.  I know I’ll get the strength back but until then, it’s just kinda scary.

So it happened and I did not die.  Good to know!

So, back to the plan.  I found out that I was NOT on the placebo in my study but was actually on Enbrel.  A surprise, yes, because it did nothing for me.  So I am now going to be starting Remicade which I’m terrified of.  I will start most likely next Wednesday since I have most of the week off.  I don’t really care if it makes me nauseous because I despise turkey so it will have no bearing on my Thursday plans.  I know, I’m a sucky American.

Why am I terrified?  I’m not afraid of needles.  I think it’s just the thought of it.  People only get infusions if they’re really sick. And I just don’t want to classify myself that way because when it’s under control, I’m fine.

So if I can fall which is something that can really seriously injure me and be fine, then certainly infusions can’t be that bad, right?

7 responses »

  1. I was scared to take Remicade of first as well. I’ve been on it since June and I kid you not, I haven’t had any side effects. No nausea, nothing. I don’t feel that it’s completely working yet but my Rheumy asked me to give it a year. Some days I’m convinced I’m feeling better and on the road to wellness, but I usually get a kick in the pants not long after that thought.

    I’m having my next infusion on Friday. I actually look forward to them. The more I take the closer I am to getting better?

  2. Falling can be scary. With gimpy joints, we can’t react as “flexibly” as people who aren’t so afflicted. I fell twice last winter after having gone years without any falls. Both times I fell indoors on carpeting, not outside on ice or snow, like you might expect. I suppose it’s because I’m less on guard when I’m just walking around indoors.

    The first time, I was cushioned by the backpack I was carrying (the yogurt and sandwich that were supposed to be my lunch didn’t fare so well, though). I did get some help to get up by a couple of kind gentlemen in the lobby (I was working out of state and living in an extended stay hotel at the time)

    The second time I fell, I somehow fractured my foot. Of course, I thought it was just bruised and was aching because the fall aggravated the RA. Two months later, an x-ray showed the fracture. I suppose this is a down side to being used to pain 🙂

  3. It’s a good thing your nose broke your fall! Also good it didn’t leave a bloody trail down the wall, glad you didn’t hurt yourself. I crashed my bike hard about a year ago on some fast trails, the front end washed out on me in 4th gear. After a minute or two on the ground, I got my breath back and decided I didn’t break my collarbone after all. We are still tough, we just have more at stake than healthy people when we do go down.

    Good luck with Remicade, I know 2 people who are using it and it is working well for them.

  4. Amanda, it’s normal to be nervous when trying a new med. I remember the first dose of Metho 9 years ago. I was scared $hit. I had great success with Remicade for many years – I think I was on it about 7.5 years. I was allergic to the med, so they would pre medicate me with benedryl and that eliminated any problems. The remicade worked beautifully for me for that time. Then it did start to lose it’s effectiveness. Ultimately I switched to Humira, which didn’t do much. I tried to give it a year, but lasted about 8 months before switching to Enbrel which works beautifully on me. It’s trial and error and not everyone gets the same results. But you gotta just keep trying, tweaking and know yourself!!

    And I can relate to the falling. I was clumsy since birth, so add the RA to the mix and I fall regularly. And it scares me sometimes. I know that I can’t really fall. We got two cords of wood delivered recently and I offered to help stack it and my boyfriend said “no thanks, you fall down.” He’s right.

    Take care of yourself, keep blogging because I really enjoy reading. Good luck with the Remicade. I’ll bet it goes better and easier than you’re expecting.

  5. I really understand about the Remicade. I’m used to it by now, and in reality, I don’t think it’s any riskier than the other biologics. But there is something about the concept of an INFUSION drug. You put it perfectly – “People only get infusions if they’re really sick.” I get mine at a hospital, with people getting chemo, and the fact that I belong in that room still upsets me sometimes.

    I’m sure you’ll be fine with them once you’re used to the idea. I don’t mind mine anymore – I got a little portable DVD player, and I sit and watch Desperate Housewives DVDs and eat chocolate! Then I go out for ice cream when I’m done. I’m often groggy and sleepy for the rest of the day, but not sick. I wish you the same!

  6. I was also on a double blinded study where I did receive the placebo Enbrel. I don’t know what is worse…not having it work or shooting yourself full of sugar water for two years?!? Good luck with the Remicade…be brave!

  7. Oooh, I totally understand the being sick on immuno-suppressants. Sucks so bad sometimes. Good luck on the new med. I hope it helps!

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