End of the Road?


“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face.  The realization that I may be at the end of the road isn’t easy to accept.  The Rituxan didn’t work.  My rheumy doesn’t want to try anything else at this time.  Should I just accept that this is how my life is for the foreseeable future?

il vuoto

I’ve been in a wheelchair for just about a year now.  Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life.  Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure?  Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are?  Does that mean I’ve given up?

But there is a glimmer of hope.  My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome.  I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work.  But I’m kind of terrified that I’m just setting myself up for more disappointment.

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10 Comments to

“End of the Road?”

  1. On September 26th, 2009 at 4:38 pm Amanda Says:

    I’m so sorry hunny…but no…it doesn’t mean you are giving up! Just keep holding on to hope…there is always hope! There has got to be right? I will keep on praying for you…you are a wonderful person and have kept me going when no one else would so if you need me anytime you just let me know. Love you! <3

    Reply to Amanda

  2. On September 26th, 2009 at 5:06 pm Geneviève Says:

    The picture you’ve chosen to illustrate your post is really beautiful and meaningful. It’s a statement. Hope you’ll have better news. We don’t really know each other, but I can see you’re a really wonderful person. Take care.

    Reply to Geneviève

  3. On September 27th, 2009 at 10:21 am J Says:

    I’m so sorry. :( :( :(
    I really hope the new doc can help! ((hugs))!!!

    Reply to J

  4. On September 27th, 2009 at 10:43 am Jeannette Says:

    Oh you poor soul-I feel for you sweetie as I am and have been there many times. Most importantly-you *must* keep hope alive. There is always hope no matter what as we never know what will happen as each day unfolds.

    I too suffer with chronic illness/chronic pain and also had a workplace injury that has left me permanently disabled with a back injury. It is very difficult to keep hopeful some days but I think that is the most important factor in coping. If we give up on hope..well, life would just be horrible.

    One of my favorite sayings used to be-”Don’t expect anything and you won’t be disappointed.” Now, however I have chosen a sort of middle ground. I remain hopeful but do not allow myself to be too unrealistic as dealing with disappointment if your hopes are too high is devastating. All you can do is keep your head up, smile and know in your heart that there is always reason to hope even when things seem the darkest!

    I am new to your site and absolutely LOVE it-very well done! I will be back often and hopefully I will be able to offer you support along the way as we share the challenging journey of living with chronic illness.

    Take care,

    Reply to Jeannette

  5. On September 27th, 2009 at 12:32 pm Jessie Says:

    I met you in Chat today and my heart goes out to you. I have grands just couple yrs younger. Remember you cant give up . Thats just not an option. Cling to your friends. I hope u put me in that list. You have my email send me a note

    Reply to Jessie

  6. On September 27th, 2009 at 2:22 pm shannon Says:

    Oh man Belle I am so sorry to hear that your doctor told you that. Do not give up hope. They told my mom she would not be walking by the time she was thirty and ififty years later she is still walking. There are always new breakthroughs in medicine so like they say there is always hope. I say hope for the best expect the worse that way you are never dissapointed but if you could make your pain just a piece of the pie and not the whole pie you might be able to attain some semblance of a life. I know that it is very hard to do but keep on concentrating on your massive creativity and that will help you get through these dark days. It is ok to give yourself a break and regroup. Sometimes you got to take a rest from the striving. Then later you will be able to be refreshed and take the problem head on.
    We love you

    Reply to shannon

  7. On September 27th, 2009 at 6:15 pm Annette Says:

    And maybe even the new rheumy can recommend another whose opinion he respects. i see one of those top dog Drs even though I am not too complicated a case of RA. And my Sjogren’s is only (haha) secondary to the RA.
    Theoretically i can keep on walking – a few fusions still to go when it gets more painful. I am sorry to hear the Rituxan did not work. It sounded so promising.

    And the toruble with trials is that you don’t want to do a “blind” one and risk a placebo. I only did a trial once and the drug was a wipeout, but the care and attention I got helped change my actions a bit for the better.

    Reply to Annette

  8. On September 27th, 2009 at 6:20 pm Katgirl Says:

    It is a horrible feeling to have a doctor give up on you. I am with Shannon in that it is OK to stop pushing for a bit to allow yourself to regroup. But hope is ABSOLUTELY essential. I think in 10 years we’ll have so many more options to treat Sjogrens and the rest of the autoimmune group of diseases. Hang in there until then!

    Reply to Katgirl

  9. On September 29th, 2009 at 10:17 am suzanne Says:

    The Roadback Foundation http://www.roadback.org

    Their forum – http://www.rbfbb.org

    Reply to suzanne

  10. On September 29th, 2009 at 1:09 pm Sympathizer with RA Says:

    Don’t give up. There is a road back. If you are open to it, you will find it.

    Reply to Sympathizer with RA

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