Better Enough?

March27


I’m well on my way on the road to recovery.  I’ve been doing more and more things independently, and I’ve been walking up a storm.  But I’ve been asking myself how much better is better enough?  What risks am I willing to take to achieve a complete recovery?

Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church.  Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo.  The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods.  It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year.  I also feel more visibly disabled than when I’m just using my walker.

And I’m worried I’m headed back to my wheelchair.  The more I walk the more my joints have been hurting me.  But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee.  Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury.  I’m also supposed to start physical therapy.

So though I’ve been doing great at increasing the distance I can walk, it has come at a cost.  So that is one part of the equation.

The other part of the equation is the question of how I’ve been able to reach this point.  I believe it is largely a miracle.  A gift from God that has allowed me to recover my strength so quickly.  But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit.  So the question becomes would another round of Rituxan would get me even farther?  And is that worth the risk?

Those Rituxan infusions were no walk in the park.  I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash.  And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections.  But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions?  That is a question I will discuss with my Rheumatologist at my next appointment.

In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that?  Am I better enough?  But even as I write this, I think I know the answer.

No.

I want my life back.  I want to live without pain every moment of every day.  I want to be able to go hiking and play tennis again.  I want to be able to make plans and not worry about how much energy I’ll have.  I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them.  I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.

So NO I don’t want to be better enough.  I want to be better!  And I’m willing to risk a lot to get there.

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6 Comments to

“Better Enough?”

  1. On March 27th, 2010 at 6:48 pm Kimber Says:

    If anyone can do it, Lala, it’s you. I love you with my whole entire being.

    Reply to Kimber

  2. On March 27th, 2010 at 8:51 pm Heidi Says:

    You are an inspiration!!! I love the last photo of you, standing tall with a big smile on your face ready to fight the fight and face the world – absolutely beautiful!

    Reply to Heidi

  3. On March 27th, 2010 at 11:02 pm ~ Dad Says:

    “All that man needs for health and healing has been provided by God in nature, the challenge of science is to find it.” – Philippus Theophrastrus Bombast that of Aureolus Paracelsus (1493-1541)

    “Of several remedies, the physician should choose the least sensational.” – Hippocrates

    “And we have made of ourselves living cesspools, and driven doctors to invent names for our diseases.” – Plato

    Reply to ~ Dad

  4. On March 28th, 2010 at 12:39 pm Alison Says:

    I’ve been asking myself this a lot these last few days. I know next month when I see my doctor he is going to recommend stem cell infusions, which could make a huge difference, but I don’t know if I want to risk infection and he doesn’t really know what the long term risks are. Six months ago I was insulted when my mom even suggested it might not be worth the risk, but now I’m scared again to take a risk. I tell myself to give it another year, see if the other medicines help, but I’m not getting any younger, time is still going by.

    Reply to Alison

  5. On March 29th, 2010 at 7:44 am Lairosiel Says:

    you’re probably one of the strongest person I “know”
    I really hope for you to getting BEST!

    the last picture of you is so positive, you’re looking so beautiful and positive!

    Keep it going Girl *smile*

    Reply to Lairosiel

  6. On March 29th, 2010 at 1:09 pm Marti Says:

    Way to go Lauren! You know what to do. You’re doing it! With help from above, within, beyond and all around you. :)

    Reply to Marti

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