Saturday, July 3, 2010

Ride the Bus or Keep on Walking?

I'm flaring. Badly. I'm in between treatments. The Simponi wore off sometime this week. We gave up on mtx after five years of litle help, and 85% hair loss. So now I had a birthday. I'm 35, and I want to grow my hair back.(Sometimes I wear extensions, and though I get compliments, I always feel strange with them in, like I have some big secret that is about to get exposed.)

Ok, so my next step was supposed to be AP. My hubby agreed, even my Rheum. agreed, BUT (and there is always a but), two of my other docs expressed disgust that I would try it. Hence, when I came to see the rheumy I asked her what was up.

This was HER experience with AP. It can be good. It can be good, and I may feel great on it. (So this is where my hubby and I are getting excited.) But then she said, "I did AP with 1 girl with Sclerdoma. She was actually flying to Calirfornia to get it done, and I was just monotoring. She felt fantastic...for one year. And then it stopped. No one could get it tweaked enough for it to work again."

She went onto tell me that, "The AP girl was ready to sell her story to the world, but then it stopped. She said we can try AP with me, but she doesn't think we are there yet. She wants to keep trying until we've hit all the biologic drugs so that I'm not crippled by the time I'm 40 - 45."

Why feeling good and becoming cripple should go hand and hand, we can't figure out.

In any case, she STRONGLY suggested that we move to Arava and Rituxan.

Fine. Let's go. insurance company decided I need prior auth. for Arava. Why do they do that? They approve drugs that cost thousands in a blink, but every once in a while they will say nada to something dumb like a birth control pill.

And...the infusion nurse happens to be on vacay for this week. Which means, I don't even get to schedule the infusion until next week.

Meanwhile its been about 6 -7 weeks with no Simponi, and my body is SCREAMING at me. So yeah, you guessed it, I'm riding the steroid/pain med. train...which means I feel like 4% better.

Anyway, that's not very entertaining, but I wanted to catch everyone up on my new treatment option b/c we discussed it at lenghth on facebook.

However today, as I am flaring, I have been in bed quite a lot watching the House Marathon. They just showed my favorite one.

Its the one where House undergoes some memory brain surgery to figure out why Wilson's girlfriend is dying.

He ends up in a small coma at the same time Amber dies. So then they are both riding in this all white bus wearing all white gowns. Obviously, they have one way tickets to Heaven. Personally, I'd prefer to fly or maybe take a hot air balloon, but whatever...

So House asks Amber, "Are you dead?"

And she says, "Yes...but you're not yet. You need to get off the bus."

And he replies, "I can't"

She: Why not?

House: Because it doesn't hurt on the bus.

Right there. That's what does it to me.

That line says it all. Every time I hear it it rings with truth throughout my entire being. Because we all, whether we admit it or not, have that nagging thought in the back of our heads that there is only one way...ONE make the pain stop.

But then...everything stops. Our joys, our goals, our connections to our families.

But the fact that we even have that nagging feeling is enough for people to recognize JUST HOW horrific it is to live with chronic pain.

SO FIX IT PEOPLE. We're not just complaining. We are losing most of our lives. We may be here breathing, but that's just not enough.


  1. I think we have all thought it at one point or another. But, eventually, you snap back and realize all the good things you'd give up, too - friends, family, the feel of a lover's touch, the smell of lilacs in spring... Get off the bus, SB! You've so much to live for!

    I'm really, really hoping the new combination works (as I'm sure everyone you know is!). I can tell you that I took Arava for 9 months and felt AMAZING on it. But, my white cell count got really low and I was thinking about the baby-stuff, so I went off it. (In fact, I have some on hand - maybe I should send it to you until your insurance kicks in, LOL!) Seriously, if I get to the point again where what I'm taking now stops working, I'll be begging for the Arava - white cells be damned.

    I'm keeping you in my thoughts and praying for you, as always. Gentle hugs.

  2. OK, really dumb question, here: What is AP?
    I'm taking Arava and sulfasalazine. Doc says they're working, though I still have daily pain, mostly in my hands. I've noticed no side effects except that the Arava also makes my hair fall out, tiny bit by tiny bit. I don't like it, but I'm still a long way from needing a wig or turbans.
    SB, I'm so sorry you're in such constant, serious pain and dealing with such terrible frustration. And I'm sorry you're having to wait around for another !@#!%#@ insurance company to show some humanity and mercy and grant you the right to take a medicine that might get the incurable disease you're suffering from under control. That just makes me boil. I hope the Rituxan and Arava combo work for you, too, and that your hair all comes back. Most of all, I don't want you even thinking about that stupid bus. Seriously. YOU might not hurt anymore, but your husband and little boy would be hurt forever, not to mention the rest of your family, your friends, and yes, even us blog friends.
    Stupid bus. Goes Nowhere.
    (((((hugs)))))) for you.

  3. Thanks you two. I know I really don't belong on the bus...Its jut those low moments when you realize its been five years of constant pain, and there's hardly an end in sight. I would be so grateful for any prayers you guys can send me about the new combo, and of course, I'll be sending them right back!!!

  4. Hey SB....I just have to state the obvious here....scleroderma are two totally different conditions and are to be treated differently. AP for scleroderma is totally different and more aggressive. Many on roadback are finding out their scleroderma is due to Lyme. If that is the only patient your doc has to go by...then that isn't much. She shouldn't base it on one patient...also a patient with a total different condition. That's just my honest opinion. I hope the new treatment works for for hair loss on Arava...many have it. I was on it for a month before starting AP and didn't have any hair loss...hope the same goes for you...we love our hair :)

  5. oops...first sentence should have said "scleroderma and RA are two totally different conditions" I need to start proofreading :P

  6. I am sorry that you are not having any luck with any of these treatment options. Has your rheumy told you about Remicade infusions? It is often prescribed for patients who are not responding to other treatment options. Hope you feel better soon. Flare ups suck. Don’t you just wish Dr. House will jump out of the TV and treat you? I have had dreams about that smart jerk. I can so relate to that episode you are talking about. Anyway, I hope you feel better soon.

  7. P.S. Wren - AP is antibiotic therapy. You can read about it on The Road Back website. Google: Road Back Rheumatoid Arthritis.

    Also, Leslie at Southern Gal with RA has been doing Ap, and she is feeling fabulous. So that was more or less my motivation. But I have to admit, being in a wheelchair by 40 just isn't an option I want to consider.

    And I KNOW my family would be devestated. I've often commented they are the reason I get out of bed every day...well, most days. Not so much today. ;)

  8. Ah, thanks, SB. I kinds-sorta knew that's what it meant, but hadn't seen it called "AP." I've followed Leslie as she's trying it, and I've been happy for her that it seems to be working. Sulfasalazine is also an antibiotic; perhaps that's why my treatment is working, too, at least according to blood test results. And it was strange (I blogged about it) that when I was taking that monster course of super-antibiotics for the infected dog-bite, my rheuma retreated wayyy into the background. I thought perhaps it was simply that my body/mind was processing this new, different pain instead of the pain it was used to, but ... maybe not. Maybe the antibios tamped my autoimmune response down so hard that it couldn't attack me anymore. What an odd image...

    Anyhoo, I'm relieved to hear you're not contemplating a ride on the white bus, but are going to continue the mysterious, dangerous, always-intriguing and often painful and aggravating journey in this dimension with the rest of us. The white bus will come for all of us someday, but there's so much beauty and joy on our road in the meantime.

    Have a lovely Sunday. Enjoy the gifts. List and share them with the people you love.
    -Wren ;)

  9. That episode of House always gets to me. It's really difficut to deal with the pain on a day to day basis. It does get tempting from time to time to just live on the pain-free bus. But, at the same time, missing out on everything is just not an option.

    Having RA always has reminded me of being James Bond or Indiana Jones - when it would be very easy to simply give in and let the RA win, you go on an adventure. It might not be the most fun, and you might not get the best result, but trying and enjoying the journey as much as you can is key.

    I'm sorry you're not doing well right now. I know that the thought of ending up in a wheelchair is terrifying. I hope that you find something that works for you, and soon dammit.

  10. I'm really sorry you are feeling so crappy. Wouldn't it be great if we could spend an hour or two on the bus to gather strength for the rest of the day and give us something to look forward to. You are a fighter, we all are, so fight for the medication that YOU feel is right. Unfortunately the doctors don't know everything. I was in a wheelchair by 40, right after my first hip operation (I'd had RA for 16 years by then). It is not easy, there is no question, but life goes on and you make the best of it. Everyone adjusts. There have been a lot of new treatments since I was diagnosed in 1984 and I'm sure there will be many more. The next one that works (long term) could be right around the corner. Prayers and hugs!

  11. beautifully said. Because there are times when you do flirt with the idea of the one-way ticket. Maybe not now, maybe not in a month, but play with it as an option if all else fails. It's not a pretty place to be.

    I hope you get an appointment soon and that the new drugs work for you.

  12. I just wanted to tell you about my experience on AP---I was on mtx and plaquenil for the first year I had RA, then those PLUS AP for almost another year, and have been on only AP and plaquenil for the last 2 years. I had x-rays last month which showed no new damage. I also have almost complete pain and inflammation control----although if I get stressed out sometimes my foot or ankle will flare a bit. So not all feeling good on AP means more damage down the road.

    But AP is not for the feint at heart---it can be quite complicated figuring out probiotics, fungal control (a problem with many RA treatments), dose tweaking, and, most importantly, enlisting the support of your medical caregivers. I also had to stop eating gluten to get rid of the last residual chronic pain. It's no mystery to me why some just prefer to let their doctors do the thinking on treatment for them.

    That said, I sure hope you find a way of dealing with your RA that works for you, and that you don't stay on that bus. Walking and seeing the neighbourhood, smelling the flowers and petting the dog are nice. Don't give up!