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.

Recent Comments:

• Alison commented on Fear and Liver Failure writing it all down makes me feel better too. I agree with maureen, fear is difficult but you seem t
• Robby commented on Fear and Liver Failure I’m thinking of you constantly Belle… It is so hard to say have no fear…but you and I both have
• maureen commented on Fear and Liver Failure I’m so sorry that you got this bad news. Fear is a difficult thing to deal with, but it seems you ha
• Shalunya commented on Patience in the Hospital I am blessed that recently I have found myself on the light side of the hospital bed. So I will send
• Ariana commented on Patience in the Hospital Hoping my visit will help with the monotony tonight!!!

© Novel Patient for Novel Patient, 2010. | Permalink | 6 comments | Add to del.icio.us
Post tags: ankle, ankle braces, Appointment, art, baptism, belly buttons, Better, Church, complete recovery, complication, Conference, distance, doctor, Doctors, Dressed, Elephants, energy, fever, gift from god, God, health, help, hilly, hospital, infusions, joint pain, joints, knee braces, left knee, Medical Specialties, Medicine, miracle, mom, moment, overuse, overuse injury, oxygen, pain, patient, physical therapy, Prednisone, question, Recovery, Rheumatologist, risk, rituxan, rituxan infusion, Rituximab, road, Santa Barbara, santa barbara zoo, short periods, Singles, singles ward, stamina, Storm, strength, tennis, title, United States, usc, walker, WALKING, week, wheelchair, worth the risk, Zoo

It’s been a rough few weeks since the Rituxan.  Not only have I been worn out to the max, but Sarina took another job 6 hours away.  I went through hiring a new caregiver while physically exhausted.  Then all too quickly I had to say goodbye to Sarina.  That was emotionally exhausting.

My new caregiver Melissa is fantastic.  I love her already, but getting to know someone new is tiring as well.

Then this past weekend I went to a conference I’d had planned for months (stay tuned for my piece on accessible travel).  It was the most fun I’ve had in a long time, but it took a LOT out of me.  And I’m still not over the Rituxan infusion.  I’m still on higher doses of Prednisone to calm that reaction.

Then upon returning from the trip this past weekend I came down with a double kidney infection.  My energy stores are already shot and now I’ve got an infection to contend with.  I’m just worn out in every way.  And I guess I’ve been feeling somewhat sorry for myself.  I just don’t have the energy to keep up my optimistic outlook.  I’m worried that I’m going to end up needing IV antibiotics and a prolonged hospitalization like I have every other time I’ve had a kidney infection.  Feeling sorry for myself, it’s hard to listen with empathy to others seemingly lesser problems.  And I hate feeling this way.  More than that, I hate myself for feeling this way.  It’s not me.

But I can’t seem to cut myself some slack either.  My friends tell me its okay to want to whine a bit right now with everything going on, but I’m not okay with it.  I guess I’m realizing how much of a control and perfectionism issue this really is.  I can’t control so much in my life right now, but I can control how I react to and deal with it.  Normally this is a good thing.  I’m able to stay happy through really difficult and trying times in my life.  As bad as things sometimes are I’ve been able to stay positive and strong.  But when I get emotionally too worn down it turns on me.  I turn on myself.  When I cannot maintain it anymore, I hate myself for not being perfect.  Right now I hate myself for indulging in self pity.

I often quip that I am a recovering perfectionist.  I suppose I have more recovering to do than I thought.

Recent Comments:

• shannon commented on Art Therapy Yay Lauren. I am so proud of you and I will continue to root for your art therapy. It is a wonderful
• Devonmeadows commented on The Rituxan Gamble Stop — !!
• Maz (Australia) commented on The Rituxan Gamble I am amazed that you are contuing on this treatment path when you know how serious the side effects
• Katgirl commented on 30 Things About My Invisible Illness You May Not Know You are doing a great job handling life with several invisible illnesses. I am really glad you have
• PolyMon commented on 30 Things About My Invisible Illness You May Not Know We love you Belle!

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Post tags: accessible travel, caregiver, hospital, hospitalization, kidney infection, optimistic outlook, perfectionism, pity, Prednisone, rituxan infusion, whine

When I was getting ready for my first Rituxan infusion I was so scared and didn’t know what to expect.  So for my second infusion I decided to use my new Flipcam to record the process for all of you!  I hope that it will give you a fair idea of what it was like for me.

WARNING:  This video contains footage of real medical procedures as well as some mild adult language and topics.  You’ve been warned!

In related news, my friend Marti has been encouraging me to visualize the Rituxan working in my body.  I figure it can’t hurt, so today I used The Hero Machine to make a visualization of Rituxan as my own personal superhero!  She’s all ready to kick some B-Cell butt!

It will still be at least a month until I might start to see some results from the Rituxan, but in the meantime I will dream of my Rituxan Hero zapping my B-Cells into oblivion.

Recent Comments:

• Devonmeadows commented on The Rituxan Gamble Stop — !!
• Maz (Australia) commented on The Rituxan Gamble I am amazed that you are contuing on this treatment path when you know how serious the side effects
• Katgirl commented on 30 Things About My Invisible Illness You May Not Know You are doing a great job handling life with several invisible illnesses. I am really glad you have
• PolyMon commented on 30 Things About My Invisible Illness You May Not Know We love you Belle!
• sirpoins commented on A New Look You look great Belle! Keep that chin up…you’re a great fighter!

© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: b cell, Flipcam, hero machine, rituxan, rituxan infusion, superhero, video, visualization